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Gene Expression Profiling for Melanoma Prognosis: Going Beyond What We See With Our Eyes
Dermatology certainly is the most visual medical specialty. In the current era of powerful electronic imaging and laboratory techniques, the skills of physical diagnosis seem to have become less important in medicine—not so in dermatology, in which the experienced clinician is able to identify many conditions by simply looking at the skin. Of course, dermatologists do heavily rely on dermatopathologists to microscopically visualize biopsies to distinguish diseases. Even as we acknowledge the dominant role of visual recognition, there is increasing progress in making clinical determinations based on molecular events. The era of genomic dermatology is here.
The Genodermatoses
There are more than 500 dermatologic conditions resulting from heritable mutational events.1 The rarity of most of these diseases and variability in phenotypic manifestations presents considerable diagnostic challenges, typically the province of a select group of clinical pediatric dermatologists whose abilities have been developed by experience.2 However, the addition of genomic analysis has now made reliable identification more accessible to a wider group of clinicians.3 The Human Genome Project was arguably the most successful health policy endeavor in human history, promoting the development of massive automated, information theory–driven applications to analyze DNA sequences.4 We all think of DNA analysis as the ultimate means to detect mutations by sequencing whole exomes—and in fact the entire genome of affected individuals searching for mutations—but DNA sequencing often is insufficient to detect mutations in noncoding regions of genes and to identify abnormalities of gene expression (eg, splice variants). Building on the advances in high-throughput nucleic acid sequencing and massive computerized analysis, the field has now taken a quantum leap further to sequence transcribed RNA to detect abnormalities.5
The techniques are straightforward: RNA is isolated and reverse transcribed to complementary DNA. The complementary DNA is amplified and then processed by high-throughput sequencers. The sequences are then identified by computer algorithms. It is possible to fully define the transcriptomes of multiple genes, even reaching the threshold of resolution of gene expression emanating from a single cell.6
Studying Gene Expression for Malignant Melanoma
As much as we rely on visual interpretations, we acknowledge that many conditions look very similar, whether to the naked eye or under the microscope. This is true for rare diseases but also for the rashes we routinely see. A group of investigators recently used RNA transcriptome sequencing to analyze differences between atopic dermatitis and psoriasis, permitting better differentiation of these 2 common conditions.7
One of the greatest challenges confronting dermatologists and their dermatopathologist partners is to distinguish malignant melanoma from benign nevi.8 Despite staining for a number of molecular markers, some lesions defy histopathology, such as distinguishing benign and malignant Spitz nevi; however, recent work on RNA transcriptomes suggests that gene expression may increase confidence in assessing atypical Spitz nevi.9 A 23-gene expression panel has yielded a sensitivity of 91.5% and a specificity of 92.5% in differentiating benign nevi from malignant melanoma.10
From the Research Laboratory to Routine Clinical Use
Undoubtedly, it is a large step from proof-of-concept studies to accepted clinical use. The ultimate achievement for a laboratory technique is to enter approved clinical use. Gene expression panels have now been approved by numerous third-party insurers to help predict future clinical evolution of biopsied melanomas. Although early in situ melanomas are eminently curable by wide excision, lesions that have more concerning characteristics (eg, depth >0.8 mm, ulceration) may progress to metastatic disease. The gratifying success of checkpoint inhibitor therapy has improved the previously dismal outlook for advanced melanomas.11 Dermatologists search for clues to suggest which patients may benefit from adjuvant therapy. Sentinel lymph node biopsy (SLNB) has been a standard-of-care technique to help make this determination.12
It has now been demonstrated that gene expression array analysis can provide evidence complementing SLNB results or even independent of SLNB results. In extensive validation studies, a 31-gene expression panel analyzing initial melanoma biopsy specimens showed predictive value for later recurrence and development of metastatic disease.13,14 The gene expression studies have identified patients with negative SLNBs who have gone on to develop metastatic melanomas.15 It has been suggested that gene expression panel diagnosis may reduce the need for invasive SLNBs in patients in whom the surgical procedure may involve risk.16
Looking to the Future
The progress of science is the result of many small steps building on prior work. The terms breakthrough and game changer in medicine have been popularized by the media and rarely are valid. On the contrary, sequential development of methods over many years has preceded the acclaimed successes of medical research; for example, the best-known medical breakthrough—that of Salk’s inactivated polio vaccine—was preceded by the use of an inactivated polio vaccine by Brodie and Park17 in 1935. However, it was the development of tissue culture of poliomyelitis virus by Enders et al18 that provided the methodology to Salk’s group to produce their inactivated polio vaccine.
The ability to go beyond our visual senses will be of great importance in characterizing the variability of skin diseases, especially in skin of color patients; for example, acral melanoma is perhaps the primary melanocytic malignancy in darker-skinned patients and is the target of RNA transcriptomic research.19 Progress is continuing on gene therapy for a growing number of skin conditions.20,21 In vivo correction of abnormal genes is being attempted for a number of inherited cutaneous diseases,22 notably for disorders of skin fragility.23 For now, we welcome the addition of genomic capabilities to the visual practice of dermatology and the capability to go beyond that which we can see with our eyes.
- Feramisco JD, Sadreyev RI, Murray ML, et al. Phenotypic and enotypic analyses of genetic skin disease through the Online Mendelian Inheritance in Man (OMIM) database. J Investig Derm. 2009;129:2628-2636.
- Parker JC, Rangu S, Grand KL, et al. Genetic skin disorders: the value of a multidisciplinary clinic. Am J Med Genet A. 2021;185:1159-1167.
- Richert B, Smits G. Clinical and molecular diagnosis of genodermatoses: review and perspectives. J Eur Acad Dermatol Venereol. 2023;37:488-500.
- Green ED, Watson JD, Collins FS. Human genome project: twenty-five years of big biology. Nature. 2015;526:29-31.
- Saeidian AH, Youssefian L, Vahidnezhad H, et al. Research techniques made simple: whole-transcriptome sequencing by RNA-seq for diagnosis of monogenic disorders. J Invest Dermatol. 2020;140:1117-1126.e1.
- Deutsch A, McLellan BN, Shinoda K. Single-cell transcriptomics in dermatology. JAAD Int. 2020;1:182-188.
- Liu Y, Wang H, Taylor M, et al. Classification of human chronic inflammatory skin disease based on single-cell immune profiling [published online April 15, 2022]. Sci Immunol. doi:10.1126/sciimmunol.abl9165
- Reimann JDR, Salim S, Velazquez EF, et al. Comparison of melanoma gene expression score with histopathology, fluorescence in situ hybridization, and SNP array for the classification of melanocytic neoplasms. Mod Pathol. 2018;31:1733-1743.
- Hillen LM, Geybels MS, Spassova I, et al. A digital mRNA expression signature to classify challenging spitzoid melanocytic neoplasms. FEBS Open Bio. 2020;10:1326-1341.
- Clarke LE, Flake DD 2nd, Busam K, et al. An independent validation of a gene expression signature to differentiate malignant melanoma from benign melanocytic nevi. Cancer. 2017;123:617-628.
- Stege H, Haist M, Nikfarjam U, et al. The status of adjuvant and neoadjuvant melanoma therapy, new developments and upcoming challenges. Target Oncol. 2021;16:537-552.
- Morrison S, Han D. Re-evaluation of sentinel lymph node biopsy for melanoma. Curr Treat Options Oncol. 2021;22:22.
- Gerami P, Cook RW, Russell MC, et al. Gene expression profiling for molecular staging of cutaneous melanoma in patients with sentinel lymph node biopsy. J Am Acad Dermatol. 2015;72:780-785.e3.
- Keller J, Schwartz TL, Lizalek JM, et al. Prospective validation of the prognostic 31-gene expression profiling test in primary cutaneous melanoma. Cancer Med. 2019;8:2205-2212.
- Gastman BR, Gerami P, Kurley SJ, et al. Identification of patients at risk for metastasis using a prognostic 31-gene expression profile in subpopulations of melanoma patients with favorable outcomes by standard criteria. J Am Acad Dermatol. 2019;80:149-157.
- Vetto JT, Hsueh EC, Gastman BR, et al. Guidance of sentinel lymph node biopsy decisions in patients with T1-T2 melanoma using gene expression profiling. Future Oncol. 2019;15:1207-1217.
- Brodie M, Park W. Active immunization against poliomyelitis. JAMA. 1935;105:1089-1093.
- Enders JF, Weller TH, Robbins FC. Cultivation of the Lansing strain of poliomyelitis virus in cultures of various human embryonic tissues. Science. 1949;109:85-87.
- Li J, Smalley I, Chen Z, et al. Single-cell characterization of the cellular landscape of acral melanoma identifies novel targets for immunotherapy. Clin Cancer Res. 2022;28:2131-2146.
- Gorell E, Nguyen N, Lane A, et al. Gene therapy for skin diseases. Cold Spring Harb Perspect Med. 2014;4:A015149.
- Cavazza A, Mavilio F. Gene therapy of skin adhesion disorders (mini review). Curr Pharm Biotechnol. 2012;13:1868-1876.
- Abdul-Wahab A, Qasim W, McGrath JA. Gene therapies for inherited skin disorders. Semin Cutan Med Surg. 2014;33:83-90.
- Bilousova G. Gene therapy for skin fragility diseases: the new generation. J Invest Dermatol. 2019;139:1634-1637.
Dermatology certainly is the most visual medical specialty. In the current era of powerful electronic imaging and laboratory techniques, the skills of physical diagnosis seem to have become less important in medicine—not so in dermatology, in which the experienced clinician is able to identify many conditions by simply looking at the skin. Of course, dermatologists do heavily rely on dermatopathologists to microscopically visualize biopsies to distinguish diseases. Even as we acknowledge the dominant role of visual recognition, there is increasing progress in making clinical determinations based on molecular events. The era of genomic dermatology is here.
The Genodermatoses
There are more than 500 dermatologic conditions resulting from heritable mutational events.1 The rarity of most of these diseases and variability in phenotypic manifestations presents considerable diagnostic challenges, typically the province of a select group of clinical pediatric dermatologists whose abilities have been developed by experience.2 However, the addition of genomic analysis has now made reliable identification more accessible to a wider group of clinicians.3 The Human Genome Project was arguably the most successful health policy endeavor in human history, promoting the development of massive automated, information theory–driven applications to analyze DNA sequences.4 We all think of DNA analysis as the ultimate means to detect mutations by sequencing whole exomes—and in fact the entire genome of affected individuals searching for mutations—but DNA sequencing often is insufficient to detect mutations in noncoding regions of genes and to identify abnormalities of gene expression (eg, splice variants). Building on the advances in high-throughput nucleic acid sequencing and massive computerized analysis, the field has now taken a quantum leap further to sequence transcribed RNA to detect abnormalities.5
The techniques are straightforward: RNA is isolated and reverse transcribed to complementary DNA. The complementary DNA is amplified and then processed by high-throughput sequencers. The sequences are then identified by computer algorithms. It is possible to fully define the transcriptomes of multiple genes, even reaching the threshold of resolution of gene expression emanating from a single cell.6
Studying Gene Expression for Malignant Melanoma
As much as we rely on visual interpretations, we acknowledge that many conditions look very similar, whether to the naked eye or under the microscope. This is true for rare diseases but also for the rashes we routinely see. A group of investigators recently used RNA transcriptome sequencing to analyze differences between atopic dermatitis and psoriasis, permitting better differentiation of these 2 common conditions.7
One of the greatest challenges confronting dermatologists and their dermatopathologist partners is to distinguish malignant melanoma from benign nevi.8 Despite staining for a number of molecular markers, some lesions defy histopathology, such as distinguishing benign and malignant Spitz nevi; however, recent work on RNA transcriptomes suggests that gene expression may increase confidence in assessing atypical Spitz nevi.9 A 23-gene expression panel has yielded a sensitivity of 91.5% and a specificity of 92.5% in differentiating benign nevi from malignant melanoma.10
From the Research Laboratory to Routine Clinical Use
Undoubtedly, it is a large step from proof-of-concept studies to accepted clinical use. The ultimate achievement for a laboratory technique is to enter approved clinical use. Gene expression panels have now been approved by numerous third-party insurers to help predict future clinical evolution of biopsied melanomas. Although early in situ melanomas are eminently curable by wide excision, lesions that have more concerning characteristics (eg, depth >0.8 mm, ulceration) may progress to metastatic disease. The gratifying success of checkpoint inhibitor therapy has improved the previously dismal outlook for advanced melanomas.11 Dermatologists search for clues to suggest which patients may benefit from adjuvant therapy. Sentinel lymph node biopsy (SLNB) has been a standard-of-care technique to help make this determination.12
It has now been demonstrated that gene expression array analysis can provide evidence complementing SLNB results or even independent of SLNB results. In extensive validation studies, a 31-gene expression panel analyzing initial melanoma biopsy specimens showed predictive value for later recurrence and development of metastatic disease.13,14 The gene expression studies have identified patients with negative SLNBs who have gone on to develop metastatic melanomas.15 It has been suggested that gene expression panel diagnosis may reduce the need for invasive SLNBs in patients in whom the surgical procedure may involve risk.16
Looking to the Future
The progress of science is the result of many small steps building on prior work. The terms breakthrough and game changer in medicine have been popularized by the media and rarely are valid. On the contrary, sequential development of methods over many years has preceded the acclaimed successes of medical research; for example, the best-known medical breakthrough—that of Salk’s inactivated polio vaccine—was preceded by the use of an inactivated polio vaccine by Brodie and Park17 in 1935. However, it was the development of tissue culture of poliomyelitis virus by Enders et al18 that provided the methodology to Salk’s group to produce their inactivated polio vaccine.
The ability to go beyond our visual senses will be of great importance in characterizing the variability of skin diseases, especially in skin of color patients; for example, acral melanoma is perhaps the primary melanocytic malignancy in darker-skinned patients and is the target of RNA transcriptomic research.19 Progress is continuing on gene therapy for a growing number of skin conditions.20,21 In vivo correction of abnormal genes is being attempted for a number of inherited cutaneous diseases,22 notably for disorders of skin fragility.23 For now, we welcome the addition of genomic capabilities to the visual practice of dermatology and the capability to go beyond that which we can see with our eyes.
Dermatology certainly is the most visual medical specialty. In the current era of powerful electronic imaging and laboratory techniques, the skills of physical diagnosis seem to have become less important in medicine—not so in dermatology, in which the experienced clinician is able to identify many conditions by simply looking at the skin. Of course, dermatologists do heavily rely on dermatopathologists to microscopically visualize biopsies to distinguish diseases. Even as we acknowledge the dominant role of visual recognition, there is increasing progress in making clinical determinations based on molecular events. The era of genomic dermatology is here.
The Genodermatoses
There are more than 500 dermatologic conditions resulting from heritable mutational events.1 The rarity of most of these diseases and variability in phenotypic manifestations presents considerable diagnostic challenges, typically the province of a select group of clinical pediatric dermatologists whose abilities have been developed by experience.2 However, the addition of genomic analysis has now made reliable identification more accessible to a wider group of clinicians.3 The Human Genome Project was arguably the most successful health policy endeavor in human history, promoting the development of massive automated, information theory–driven applications to analyze DNA sequences.4 We all think of DNA analysis as the ultimate means to detect mutations by sequencing whole exomes—and in fact the entire genome of affected individuals searching for mutations—but DNA sequencing often is insufficient to detect mutations in noncoding regions of genes and to identify abnormalities of gene expression (eg, splice variants). Building on the advances in high-throughput nucleic acid sequencing and massive computerized analysis, the field has now taken a quantum leap further to sequence transcribed RNA to detect abnormalities.5
The techniques are straightforward: RNA is isolated and reverse transcribed to complementary DNA. The complementary DNA is amplified and then processed by high-throughput sequencers. The sequences are then identified by computer algorithms. It is possible to fully define the transcriptomes of multiple genes, even reaching the threshold of resolution of gene expression emanating from a single cell.6
Studying Gene Expression for Malignant Melanoma
As much as we rely on visual interpretations, we acknowledge that many conditions look very similar, whether to the naked eye or under the microscope. This is true for rare diseases but also for the rashes we routinely see. A group of investigators recently used RNA transcriptome sequencing to analyze differences between atopic dermatitis and psoriasis, permitting better differentiation of these 2 common conditions.7
One of the greatest challenges confronting dermatologists and their dermatopathologist partners is to distinguish malignant melanoma from benign nevi.8 Despite staining for a number of molecular markers, some lesions defy histopathology, such as distinguishing benign and malignant Spitz nevi; however, recent work on RNA transcriptomes suggests that gene expression may increase confidence in assessing atypical Spitz nevi.9 A 23-gene expression panel has yielded a sensitivity of 91.5% and a specificity of 92.5% in differentiating benign nevi from malignant melanoma.10
From the Research Laboratory to Routine Clinical Use
Undoubtedly, it is a large step from proof-of-concept studies to accepted clinical use. The ultimate achievement for a laboratory technique is to enter approved clinical use. Gene expression panels have now been approved by numerous third-party insurers to help predict future clinical evolution of biopsied melanomas. Although early in situ melanomas are eminently curable by wide excision, lesions that have more concerning characteristics (eg, depth >0.8 mm, ulceration) may progress to metastatic disease. The gratifying success of checkpoint inhibitor therapy has improved the previously dismal outlook for advanced melanomas.11 Dermatologists search for clues to suggest which patients may benefit from adjuvant therapy. Sentinel lymph node biopsy (SLNB) has been a standard-of-care technique to help make this determination.12
It has now been demonstrated that gene expression array analysis can provide evidence complementing SLNB results or even independent of SLNB results. In extensive validation studies, a 31-gene expression panel analyzing initial melanoma biopsy specimens showed predictive value for later recurrence and development of metastatic disease.13,14 The gene expression studies have identified patients with negative SLNBs who have gone on to develop metastatic melanomas.15 It has been suggested that gene expression panel diagnosis may reduce the need for invasive SLNBs in patients in whom the surgical procedure may involve risk.16
Looking to the Future
The progress of science is the result of many small steps building on prior work. The terms breakthrough and game changer in medicine have been popularized by the media and rarely are valid. On the contrary, sequential development of methods over many years has preceded the acclaimed successes of medical research; for example, the best-known medical breakthrough—that of Salk’s inactivated polio vaccine—was preceded by the use of an inactivated polio vaccine by Brodie and Park17 in 1935. However, it was the development of tissue culture of poliomyelitis virus by Enders et al18 that provided the methodology to Salk’s group to produce their inactivated polio vaccine.
The ability to go beyond our visual senses will be of great importance in characterizing the variability of skin diseases, especially in skin of color patients; for example, acral melanoma is perhaps the primary melanocytic malignancy in darker-skinned patients and is the target of RNA transcriptomic research.19 Progress is continuing on gene therapy for a growing number of skin conditions.20,21 In vivo correction of abnormal genes is being attempted for a number of inherited cutaneous diseases,22 notably for disorders of skin fragility.23 For now, we welcome the addition of genomic capabilities to the visual practice of dermatology and the capability to go beyond that which we can see with our eyes.
- Feramisco JD, Sadreyev RI, Murray ML, et al. Phenotypic and enotypic analyses of genetic skin disease through the Online Mendelian Inheritance in Man (OMIM) database. J Investig Derm. 2009;129:2628-2636.
- Parker JC, Rangu S, Grand KL, et al. Genetic skin disorders: the value of a multidisciplinary clinic. Am J Med Genet A. 2021;185:1159-1167.
- Richert B, Smits G. Clinical and molecular diagnosis of genodermatoses: review and perspectives. J Eur Acad Dermatol Venereol. 2023;37:488-500.
- Green ED, Watson JD, Collins FS. Human genome project: twenty-five years of big biology. Nature. 2015;526:29-31.
- Saeidian AH, Youssefian L, Vahidnezhad H, et al. Research techniques made simple: whole-transcriptome sequencing by RNA-seq for diagnosis of monogenic disorders. J Invest Dermatol. 2020;140:1117-1126.e1.
- Deutsch A, McLellan BN, Shinoda K. Single-cell transcriptomics in dermatology. JAAD Int. 2020;1:182-188.
- Liu Y, Wang H, Taylor M, et al. Classification of human chronic inflammatory skin disease based on single-cell immune profiling [published online April 15, 2022]. Sci Immunol. doi:10.1126/sciimmunol.abl9165
- Reimann JDR, Salim S, Velazquez EF, et al. Comparison of melanoma gene expression score with histopathology, fluorescence in situ hybridization, and SNP array for the classification of melanocytic neoplasms. Mod Pathol. 2018;31:1733-1743.
- Hillen LM, Geybels MS, Spassova I, et al. A digital mRNA expression signature to classify challenging spitzoid melanocytic neoplasms. FEBS Open Bio. 2020;10:1326-1341.
- Clarke LE, Flake DD 2nd, Busam K, et al. An independent validation of a gene expression signature to differentiate malignant melanoma from benign melanocytic nevi. Cancer. 2017;123:617-628.
- Stege H, Haist M, Nikfarjam U, et al. The status of adjuvant and neoadjuvant melanoma therapy, new developments and upcoming challenges. Target Oncol. 2021;16:537-552.
- Morrison S, Han D. Re-evaluation of sentinel lymph node biopsy for melanoma. Curr Treat Options Oncol. 2021;22:22.
- Gerami P, Cook RW, Russell MC, et al. Gene expression profiling for molecular staging of cutaneous melanoma in patients with sentinel lymph node biopsy. J Am Acad Dermatol. 2015;72:780-785.e3.
- Keller J, Schwartz TL, Lizalek JM, et al. Prospective validation of the prognostic 31-gene expression profiling test in primary cutaneous melanoma. Cancer Med. 2019;8:2205-2212.
- Gastman BR, Gerami P, Kurley SJ, et al. Identification of patients at risk for metastasis using a prognostic 31-gene expression profile in subpopulations of melanoma patients with favorable outcomes by standard criteria. J Am Acad Dermatol. 2019;80:149-157.
- Vetto JT, Hsueh EC, Gastman BR, et al. Guidance of sentinel lymph node biopsy decisions in patients with T1-T2 melanoma using gene expression profiling. Future Oncol. 2019;15:1207-1217.
- Brodie M, Park W. Active immunization against poliomyelitis. JAMA. 1935;105:1089-1093.
- Enders JF, Weller TH, Robbins FC. Cultivation of the Lansing strain of poliomyelitis virus in cultures of various human embryonic tissues. Science. 1949;109:85-87.
- Li J, Smalley I, Chen Z, et al. Single-cell characterization of the cellular landscape of acral melanoma identifies novel targets for immunotherapy. Clin Cancer Res. 2022;28:2131-2146.
- Gorell E, Nguyen N, Lane A, et al. Gene therapy for skin diseases. Cold Spring Harb Perspect Med. 2014;4:A015149.
- Cavazza A, Mavilio F. Gene therapy of skin adhesion disorders (mini review). Curr Pharm Biotechnol. 2012;13:1868-1876.
- Abdul-Wahab A, Qasim W, McGrath JA. Gene therapies for inherited skin disorders. Semin Cutan Med Surg. 2014;33:83-90.
- Bilousova G. Gene therapy for skin fragility diseases: the new generation. J Invest Dermatol. 2019;139:1634-1637.
- Feramisco JD, Sadreyev RI, Murray ML, et al. Phenotypic and enotypic analyses of genetic skin disease through the Online Mendelian Inheritance in Man (OMIM) database. J Investig Derm. 2009;129:2628-2636.
- Parker JC, Rangu S, Grand KL, et al. Genetic skin disorders: the value of a multidisciplinary clinic. Am J Med Genet A. 2021;185:1159-1167.
- Richert B, Smits G. Clinical and molecular diagnosis of genodermatoses: review and perspectives. J Eur Acad Dermatol Venereol. 2023;37:488-500.
- Green ED, Watson JD, Collins FS. Human genome project: twenty-five years of big biology. Nature. 2015;526:29-31.
- Saeidian AH, Youssefian L, Vahidnezhad H, et al. Research techniques made simple: whole-transcriptome sequencing by RNA-seq for diagnosis of monogenic disorders. J Invest Dermatol. 2020;140:1117-1126.e1.
- Deutsch A, McLellan BN, Shinoda K. Single-cell transcriptomics in dermatology. JAAD Int. 2020;1:182-188.
- Liu Y, Wang H, Taylor M, et al. Classification of human chronic inflammatory skin disease based on single-cell immune profiling [published online April 15, 2022]. Sci Immunol. doi:10.1126/sciimmunol.abl9165
- Reimann JDR, Salim S, Velazquez EF, et al. Comparison of melanoma gene expression score with histopathology, fluorescence in situ hybridization, and SNP array for the classification of melanocytic neoplasms. Mod Pathol. 2018;31:1733-1743.
- Hillen LM, Geybels MS, Spassova I, et al. A digital mRNA expression signature to classify challenging spitzoid melanocytic neoplasms. FEBS Open Bio. 2020;10:1326-1341.
- Clarke LE, Flake DD 2nd, Busam K, et al. An independent validation of a gene expression signature to differentiate malignant melanoma from benign melanocytic nevi. Cancer. 2017;123:617-628.
- Stege H, Haist M, Nikfarjam U, et al. The status of adjuvant and neoadjuvant melanoma therapy, new developments and upcoming challenges. Target Oncol. 2021;16:537-552.
- Morrison S, Han D. Re-evaluation of sentinel lymph node biopsy for melanoma. Curr Treat Options Oncol. 2021;22:22.
- Gerami P, Cook RW, Russell MC, et al. Gene expression profiling for molecular staging of cutaneous melanoma in patients with sentinel lymph node biopsy. J Am Acad Dermatol. 2015;72:780-785.e3.
- Keller J, Schwartz TL, Lizalek JM, et al. Prospective validation of the prognostic 31-gene expression profiling test in primary cutaneous melanoma. Cancer Med. 2019;8:2205-2212.
- Gastman BR, Gerami P, Kurley SJ, et al. Identification of patients at risk for metastasis using a prognostic 31-gene expression profile in subpopulations of melanoma patients with favorable outcomes by standard criteria. J Am Acad Dermatol. 2019;80:149-157.
- Vetto JT, Hsueh EC, Gastman BR, et al. Guidance of sentinel lymph node biopsy decisions in patients with T1-T2 melanoma using gene expression profiling. Future Oncol. 2019;15:1207-1217.
- Brodie M, Park W. Active immunization against poliomyelitis. JAMA. 1935;105:1089-1093.
- Enders JF, Weller TH, Robbins FC. Cultivation of the Lansing strain of poliomyelitis virus in cultures of various human embryonic tissues. Science. 1949;109:85-87.
- Li J, Smalley I, Chen Z, et al. Single-cell characterization of the cellular landscape of acral melanoma identifies novel targets for immunotherapy. Clin Cancer Res. 2022;28:2131-2146.
- Gorell E, Nguyen N, Lane A, et al. Gene therapy for skin diseases. Cold Spring Harb Perspect Med. 2014;4:A015149.
- Cavazza A, Mavilio F. Gene therapy of skin adhesion disorders (mini review). Curr Pharm Biotechnol. 2012;13:1868-1876.
- Abdul-Wahab A, Qasim W, McGrath JA. Gene therapies for inherited skin disorders. Semin Cutan Med Surg. 2014;33:83-90.
- Bilousova G. Gene therapy for skin fragility diseases: the new generation. J Invest Dermatol. 2019;139:1634-1637.
Some decisions aren’t right or wrong; they’re just devastating
There is one situation, while not common, that is often among the most difficult for me: the person who must be told at diagnosis that they are already dying. I am still reminded of a patient I saw early in my career.
A woman in her 40s was admitted to the hospital complaining of severe shortness of breath. In retrospect, she had been sick for months. She had not sought help because she was young and thought it would pass – the results of a “bad bug” that she just couldn’t shake.
But in the past few weeks, the persistence of symptoms became associated with weight loss, profound fatigue, loss of appetite, and nausea.
By the time she was hospitalized she was emaciated, though she appeared pregnant – a sign of the fluid that had built up in her abdomen. Imaging showed that her abdomen was filled with disease (carcinomatosis) and her liver and lungs were nearly replaced with metastatic disease.
A biopsy revealed an aggressive cancer that had no identifying histologic marker: carcinoma, not otherwise specified, or cancer of unknown primary.
I still remember seeing her. She had a deer-in-headlights stare that held me as I approached. I introduced myself and sat down so we were eye to eye.
“Tell me what you know,” I said.
“I know I have cancer and they don’t know where it started. I know surgery is not an option and that’s why they’ve asked you to come. Whatever. I’m ready. I want to fight this because I know I can beat it,” she said.
I remember that she looked very sick; her thin face and arms contrasted with her large, distended abdomen. Her breathing was labored, her skin almost gray. For a moment I didn’t know what to say.
As doctors, we like to believe that our decisions are guided by data: the randomized trials and meta-analyses that set standards of care; phase 2 trials that establish evidence (or lack thereof) of activity; case-control studies that suggest the impacts of treatment; and at the very least, case studies that document that “N of 1” experience. We have expert panels and pathways that lay out what treatments we should be using to help ensure access to quality care in every clinic on every corner of every cancer center in the United States.
These data and pathways tell us objectively what we can expect from therapy, who is at most risk for toxicities, and profiles of patients for whom treatment is not likely to be of benefit. In an ideal world, this objectivity would help us help people decide on an approach. But life is not objective, and sometimes individualizing care is as important as data.
In this scenario, I knew only one thing: She was dying. She had an overwhelming tumor burden. But I still asked myself a question that many in, and outside of, oncology ask themselves: Could she be saved?
This question was made even more difficult because she was young. She had her whole life ahead of her. It seemed incongruous that she would be here now, facing the gravity of her situation.
Looking at her, I saw the person, not a data point in a trial or a statistic in a textbook. She was terrified. And she was not ready to die.
I sat down and reviewed what I knew about her cancer and what I did not know. I went through potential treatments we could try and the toxicities associated with each. I made clear that these treatments, based on how sick she was, could kill her.
“Whatever we do,” I said, “you do not have disease that I can cure.”
She cried then, realizing what a horrible situation she was in and that she would no longer go back to her normal life. Indeed, she seemed to grasp that she was probably facing the end of her life and that it could be short.
“My concern is,” I continued, “that treatment could do the exact opposite of what I hope it would do. It could kill you sooner than this cancer will.”
Instead of making a treatment plan, I decided that it would be best to come back another day, so I said my goodbyes and left. Still, I could not stop thinking about her and what I should suggest as her next steps.
I asked colleagues what they would suggest. Some recommended hospice care, others recommended treatment. Clearly, there was no one way to proceed.
One might wonder: Why is it so hard to do the right thing?
Ask any clinician and I think you will hear the same answer: Because we do not have the luxury of certainty.
Am I certain that this person will not benefit from intubation? Am I certain that she has only weeks to live? Am I sure that there are no treatments that will work?
The answer to these questions is no – I am not certain. It is that uncertainty that always makes me pause because it reminds me of my own humanity.
I stopped by the next day to see her surrounded by family. After some pleasantries I took the opportunity to reiterate much of our conversation from the other day. After some questions, I looked at her and asked if she wanted to talk more about her options. I was prepared to suggest treatment, anticipating that she would want it. Instead, she told me she didn’t want to proceed.
“I feel like I’m dying, and if what you have to give me isn’t going to cure me, then I’d prefer not to suffer while it happens. You said it’s up to me. I don’t want it.”
First, do no harm. It’s one of the tenets of medicine – to provide care that will benefit the people who have trusted us with their lives, whether that be longevity, relief of symptoms, or helping them achieve their last wishes. Throughout one’s life, goals might change but that edict remains the same.
But that can be difficult, especially in oncology and especially when one is not prepared for their own end of life. It can be hard for doctors to discuss the end of life; it’s easier to focus on the next treatment, instilling hope that there’s more that can be done. And there are people with end-stage cancer who insist on continuing treatment in the same circumstances, preferring to “die fighting” than to “give up.” Involving supportive and palliative care specialists early has helped in both situations, which is certainly a good thing.
We talked a while more and then arranged for our palliative care team to see her. I wish I could say I was at peace with her decision, but I wasn’t. The truth is, whatever she decided would probably have the same impact: I wouldn’t be able to stop thinking about it.
Dr. Dizon is professor of medicine, department of medicine, at Brown University and director of medical oncology at Rhode Island Hospital, both in Providence, R.I. He disclosed conflicts of interest with Regeneron, AstraZeneca, Clovis, Bristol Myers Squibb, and Kazia.
A version of this article first appeared on Medscape.com.
There is one situation, while not common, that is often among the most difficult for me: the person who must be told at diagnosis that they are already dying. I am still reminded of a patient I saw early in my career.
A woman in her 40s was admitted to the hospital complaining of severe shortness of breath. In retrospect, she had been sick for months. She had not sought help because she was young and thought it would pass – the results of a “bad bug” that she just couldn’t shake.
But in the past few weeks, the persistence of symptoms became associated with weight loss, profound fatigue, loss of appetite, and nausea.
By the time she was hospitalized she was emaciated, though she appeared pregnant – a sign of the fluid that had built up in her abdomen. Imaging showed that her abdomen was filled with disease (carcinomatosis) and her liver and lungs were nearly replaced with metastatic disease.
A biopsy revealed an aggressive cancer that had no identifying histologic marker: carcinoma, not otherwise specified, or cancer of unknown primary.
I still remember seeing her. She had a deer-in-headlights stare that held me as I approached. I introduced myself and sat down so we were eye to eye.
“Tell me what you know,” I said.
“I know I have cancer and they don’t know where it started. I know surgery is not an option and that’s why they’ve asked you to come. Whatever. I’m ready. I want to fight this because I know I can beat it,” she said.
I remember that she looked very sick; her thin face and arms contrasted with her large, distended abdomen. Her breathing was labored, her skin almost gray. For a moment I didn’t know what to say.
As doctors, we like to believe that our decisions are guided by data: the randomized trials and meta-analyses that set standards of care; phase 2 trials that establish evidence (or lack thereof) of activity; case-control studies that suggest the impacts of treatment; and at the very least, case studies that document that “N of 1” experience. We have expert panels and pathways that lay out what treatments we should be using to help ensure access to quality care in every clinic on every corner of every cancer center in the United States.
These data and pathways tell us objectively what we can expect from therapy, who is at most risk for toxicities, and profiles of patients for whom treatment is not likely to be of benefit. In an ideal world, this objectivity would help us help people decide on an approach. But life is not objective, and sometimes individualizing care is as important as data.
In this scenario, I knew only one thing: She was dying. She had an overwhelming tumor burden. But I still asked myself a question that many in, and outside of, oncology ask themselves: Could she be saved?
This question was made even more difficult because she was young. She had her whole life ahead of her. It seemed incongruous that she would be here now, facing the gravity of her situation.
Looking at her, I saw the person, not a data point in a trial or a statistic in a textbook. She was terrified. And she was not ready to die.
I sat down and reviewed what I knew about her cancer and what I did not know. I went through potential treatments we could try and the toxicities associated with each. I made clear that these treatments, based on how sick she was, could kill her.
“Whatever we do,” I said, “you do not have disease that I can cure.”
She cried then, realizing what a horrible situation she was in and that she would no longer go back to her normal life. Indeed, she seemed to grasp that she was probably facing the end of her life and that it could be short.
“My concern is,” I continued, “that treatment could do the exact opposite of what I hope it would do. It could kill you sooner than this cancer will.”
Instead of making a treatment plan, I decided that it would be best to come back another day, so I said my goodbyes and left. Still, I could not stop thinking about her and what I should suggest as her next steps.
I asked colleagues what they would suggest. Some recommended hospice care, others recommended treatment. Clearly, there was no one way to proceed.
One might wonder: Why is it so hard to do the right thing?
Ask any clinician and I think you will hear the same answer: Because we do not have the luxury of certainty.
Am I certain that this person will not benefit from intubation? Am I certain that she has only weeks to live? Am I sure that there are no treatments that will work?
The answer to these questions is no – I am not certain. It is that uncertainty that always makes me pause because it reminds me of my own humanity.
I stopped by the next day to see her surrounded by family. After some pleasantries I took the opportunity to reiterate much of our conversation from the other day. After some questions, I looked at her and asked if she wanted to talk more about her options. I was prepared to suggest treatment, anticipating that she would want it. Instead, she told me she didn’t want to proceed.
“I feel like I’m dying, and if what you have to give me isn’t going to cure me, then I’d prefer not to suffer while it happens. You said it’s up to me. I don’t want it.”
First, do no harm. It’s one of the tenets of medicine – to provide care that will benefit the people who have trusted us with their lives, whether that be longevity, relief of symptoms, or helping them achieve their last wishes. Throughout one’s life, goals might change but that edict remains the same.
But that can be difficult, especially in oncology and especially when one is not prepared for their own end of life. It can be hard for doctors to discuss the end of life; it’s easier to focus on the next treatment, instilling hope that there’s more that can be done. And there are people with end-stage cancer who insist on continuing treatment in the same circumstances, preferring to “die fighting” than to “give up.” Involving supportive and palliative care specialists early has helped in both situations, which is certainly a good thing.
We talked a while more and then arranged for our palliative care team to see her. I wish I could say I was at peace with her decision, but I wasn’t. The truth is, whatever she decided would probably have the same impact: I wouldn’t be able to stop thinking about it.
Dr. Dizon is professor of medicine, department of medicine, at Brown University and director of medical oncology at Rhode Island Hospital, both in Providence, R.I. He disclosed conflicts of interest with Regeneron, AstraZeneca, Clovis, Bristol Myers Squibb, and Kazia.
A version of this article first appeared on Medscape.com.
There is one situation, while not common, that is often among the most difficult for me: the person who must be told at diagnosis that they are already dying. I am still reminded of a patient I saw early in my career.
A woman in her 40s was admitted to the hospital complaining of severe shortness of breath. In retrospect, she had been sick for months. She had not sought help because she was young and thought it would pass – the results of a “bad bug” that she just couldn’t shake.
But in the past few weeks, the persistence of symptoms became associated with weight loss, profound fatigue, loss of appetite, and nausea.
By the time she was hospitalized she was emaciated, though she appeared pregnant – a sign of the fluid that had built up in her abdomen. Imaging showed that her abdomen was filled with disease (carcinomatosis) and her liver and lungs were nearly replaced with metastatic disease.
A biopsy revealed an aggressive cancer that had no identifying histologic marker: carcinoma, not otherwise specified, or cancer of unknown primary.
I still remember seeing her. She had a deer-in-headlights stare that held me as I approached. I introduced myself and sat down so we were eye to eye.
“Tell me what you know,” I said.
“I know I have cancer and they don’t know where it started. I know surgery is not an option and that’s why they’ve asked you to come. Whatever. I’m ready. I want to fight this because I know I can beat it,” she said.
I remember that she looked very sick; her thin face and arms contrasted with her large, distended abdomen. Her breathing was labored, her skin almost gray. For a moment I didn’t know what to say.
As doctors, we like to believe that our decisions are guided by data: the randomized trials and meta-analyses that set standards of care; phase 2 trials that establish evidence (or lack thereof) of activity; case-control studies that suggest the impacts of treatment; and at the very least, case studies that document that “N of 1” experience. We have expert panels and pathways that lay out what treatments we should be using to help ensure access to quality care in every clinic on every corner of every cancer center in the United States.
These data and pathways tell us objectively what we can expect from therapy, who is at most risk for toxicities, and profiles of patients for whom treatment is not likely to be of benefit. In an ideal world, this objectivity would help us help people decide on an approach. But life is not objective, and sometimes individualizing care is as important as data.
In this scenario, I knew only one thing: She was dying. She had an overwhelming tumor burden. But I still asked myself a question that many in, and outside of, oncology ask themselves: Could she be saved?
This question was made even more difficult because she was young. She had her whole life ahead of her. It seemed incongruous that she would be here now, facing the gravity of her situation.
Looking at her, I saw the person, not a data point in a trial or a statistic in a textbook. She was terrified. And she was not ready to die.
I sat down and reviewed what I knew about her cancer and what I did not know. I went through potential treatments we could try and the toxicities associated with each. I made clear that these treatments, based on how sick she was, could kill her.
“Whatever we do,” I said, “you do not have disease that I can cure.”
She cried then, realizing what a horrible situation she was in and that she would no longer go back to her normal life. Indeed, she seemed to grasp that she was probably facing the end of her life and that it could be short.
“My concern is,” I continued, “that treatment could do the exact opposite of what I hope it would do. It could kill you sooner than this cancer will.”
Instead of making a treatment plan, I decided that it would be best to come back another day, so I said my goodbyes and left. Still, I could not stop thinking about her and what I should suggest as her next steps.
I asked colleagues what they would suggest. Some recommended hospice care, others recommended treatment. Clearly, there was no one way to proceed.
One might wonder: Why is it so hard to do the right thing?
Ask any clinician and I think you will hear the same answer: Because we do not have the luxury of certainty.
Am I certain that this person will not benefit from intubation? Am I certain that she has only weeks to live? Am I sure that there are no treatments that will work?
The answer to these questions is no – I am not certain. It is that uncertainty that always makes me pause because it reminds me of my own humanity.
I stopped by the next day to see her surrounded by family. After some pleasantries I took the opportunity to reiterate much of our conversation from the other day. After some questions, I looked at her and asked if she wanted to talk more about her options. I was prepared to suggest treatment, anticipating that she would want it. Instead, she told me she didn’t want to proceed.
“I feel like I’m dying, and if what you have to give me isn’t going to cure me, then I’d prefer not to suffer while it happens. You said it’s up to me. I don’t want it.”
First, do no harm. It’s one of the tenets of medicine – to provide care that will benefit the people who have trusted us with their lives, whether that be longevity, relief of symptoms, or helping them achieve their last wishes. Throughout one’s life, goals might change but that edict remains the same.
But that can be difficult, especially in oncology and especially when one is not prepared for their own end of life. It can be hard for doctors to discuss the end of life; it’s easier to focus on the next treatment, instilling hope that there’s more that can be done. And there are people with end-stage cancer who insist on continuing treatment in the same circumstances, preferring to “die fighting” than to “give up.” Involving supportive and palliative care specialists early has helped in both situations, which is certainly a good thing.
We talked a while more and then arranged for our palliative care team to see her. I wish I could say I was at peace with her decision, but I wasn’t. The truth is, whatever she decided would probably have the same impact: I wouldn’t be able to stop thinking about it.
Dr. Dizon is professor of medicine, department of medicine, at Brown University and director of medical oncology at Rhode Island Hospital, both in Providence, R.I. He disclosed conflicts of interest with Regeneron, AstraZeneca, Clovis, Bristol Myers Squibb, and Kazia.
A version of this article first appeared on Medscape.com.
De-pathologizing gender identity: Psychiatry’s role
Treating patients who are transgender or gender diverse (TGGD) requires an understanding of the social and psychological factors that have a unique impact on this population. As clinicians, it is our responsibility to understand the social, cultural, and political issues our patients face, both historically and currently. In this article, we provide information about the nature of gender and gender identity as separate from biological sex and informed by a person’s perception of self as male, female, nonbinary, or other variation.
Psychiatrists must be aware of how individuals who are TGGD have been perceived, classified, and treated by the medical profession, as this history is often a source of mistrust and a barrier to treatment for patients who need psychiatric care. This includes awareness of the “gatekeeping” role that persists in medical institutions today: applying strict eligibility criteria to determine the “fitness” of individuals who are transgender to pursue medical transition, as compared to the informed-consent model that is widely applied to other medical interventions. Our review of minority stress theory, as applicable to this patient population, provides a context and framework for empathic approaches to care for patients who are TGGD. Recognizing barriers to care and ways in which we can create a supportive environment for treatment will allow for tailored approaches that better fit the unique needs of this patient population.
The gender binary
In Western societies, gender has often been viewed as “binary,” oppositional, and directly correlated with physical sex or presumed anatomy.1 The theory of gender essentialism insists that sex and gender are indistinguishable from one another and provide 2 “natural” and distinct categories: women and men. The “gender/sex” binary refers to the belief that individuals born with 2 X chromosomes will inherently develop into and fulfill the social roles of women, and those born with an X and a Y chromosome will develop into and fulfill the social roles of men.1 In this context, “sex” refers to biological characteristics of individuals, including combinations of sex chromosomes, anatomy, and the development of sex characteristics during puberty. The term “gender” refers to the social, cultural, and behavioral aspects of being a man, woman, both, or neither, and “gender identity” refers to one’s internal, individual sense of self and experience of gender (Figure 12). Many Western cultures are now facing destabilization of the gender/sex binary in social, political, and interpersonal contexts.1 This is perhaps most clearly seen in the battle for self-determination and protection by laws affecting individuals who are transgender as well as the determination of other groups to maintain traditional sex and gender roles, often through political action. Historically, individuals who are TGGD have been present in a variety of cultures. For example, most Native American cultures have revered other-gendered individuals, more recently referred to as “two-spirited.” Similarly, the Bugis people of South Sulawesi, Indonesia, recognize 5 genders that exist on a nonbinary spectrum.3
Despite its prevalence in Western society, scientific evidence for the gender/sex binary is lacking. The gender similarities hypothesis states that males and females are similar in most, but not all, psychological variables and is supported by multiple meta-analyses examining psychological gender differences.4 In a 2005 review of 46 meta-analyses of gender-differences, studied through behavior analysis, effect sizes for gender differences were trivial or small in almost 75% of examined variables.5 Analyzing for internal consistency among studies showing large gender/sex differences, Joel et al6 found that, on measures of personality traits, attitudes, interests, and behaviors were rarely homogenous in the brains of males or females. In fact, <1% of study participants showed only masculine or feminine traits, whereas 55% showed a combination, or mosaic, of these traits.6 These findings were supported by further research in behavioral neuroendocrinology that demonstrated a lack of hormonal evidence for 2 distinct sexes. Both estrogen (the “female” hormone) and testosterone (the “male” hormone) are produced by both biological males and females. Further, levels of estradiol do not significantly differ between males and females, and, in fact, in nonpregnant females, estradiol levels are more similar to those of males than to those of pregnant females.1 In the last decade, imaging studies of the human brain have shown that brain structure and connectivity in individuals who are transgender are more similar to those of their experienced gender than of their natal sex.7 In social analyses of intersex individuals (individuals born with ambiguous physical sex characteristics), surgical assignment into the binary gender system did not improve—and often worsened—feelings of isolation and shame.1
The National Institutes of Health defines gender as “socially constructed and enacted roles and behaviors which occur in a historical and cultural context and vary across societies and time.”8 The World Health Organization (WHO) provides a similar definition, and the evidence to support this exists in social-role theory, social-identity theory, and the stereotype-content model. However, despite evidence disputing a gender/sex binary, this method of classifying individuals into a dyad persists in many areas of modern culture, from gender-specific physical spaces (bathrooms, classrooms, store brands), language (pronouns), and laws. This desire for categorization helps fulfill social and psychological needs of groups and individuals by providing group identities and giving structure to the complexity of modern-day life. Identity and group membership provide a sense of belonging, source of self-esteem, and avoidance of ambiguity. Binary gender stereotypes provide expectations that allow anticipation and prediction of our social environments.9 However, the harm of perpetuating the false gender/sex binary is well documented and includes social and economic penalties, extreme violence, and even death. The field of medicine has not been immune from practices that implicitly endorse the gender/sex connection, as seen in the erroneous use of gender in biomedical writings at the highest levels and evidenced in research examining “gender” differences in disease incidence.
Gender diversity as a pathology
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) has been a source of pathologizing gender diversity since the 1960s, with the introduction of “transsexualism” in DSM-II10 and “gender identity disorder of childhood” in DSM-III.11 These diagnoses were listed under the headings of “sexual deviations” and “psychosexual disorders” in the respective DSM editions. This illustrates how gender diversity was viewed as a mental illness/defect. As the DSM developed through various revisions, so have these diagnoses. DSM-IV used the diagnosis “gender identity disorder.”12 Psychiatry has evolved away from this line of thinking by focusing on the distress from biological sex characteristics that are “incongruent” with an individual’s gender identity, leading to the development of the gender dysphoria diagnosis.13 While this has been a positive step in psychiatry’s efforts to de-pathologize individuals who are gender-diverse, it raises the question: should such diagnoses be included in the DSM at all?
The gender dysphoria diagnosis continues to be needed by many individuals who are TGGD in order to access gender-affirming health care services. Mental health professionals are placed in a gatekeeping role by the expectation that they provide letters of “support” to indicate an individual is of sound mind and consistent gender identity to have services covered by insurance providers. In this way, the insurance industry and the field of medicine continue to believe that individuals who are TGGD need psychiatric permission and/or counsel regarding their gender identity. This can place psychiatry in a role of controlling access to necessary care while also creating a possible distrust in our ability to provide care to patients who are gender-diverse. This is particularly problematic given the high rates of depression, anxiety, trauma, and substance use within these communities.14 In the WHO’s ICD-11, gender dysphoria was changed to gender incongruence and is contained in the category of “Conditions related to sexual health.”15 This indicates continued evolution of how medicine views individuals who are TGGD, and offers hope that psychiatry and the DSM will follow suit.
Continue to: Minority stress theory
Minority stress theory
Ilan Meyer’s minority stress theory explores how cultural and social factors impact mental health functioning (Figure 216). Minority stress theory, which was originally developed for what at the time was described as the lesbian, gay, and bisexual communities, purports that the higher prevalence of mental health disorders among such individuals is likely due to social stigma, discrimination, and stressors associated with minority status. More recently, minority stress theory has been expanded to provide framework for individuals who are TGGD. Hendricks et al17 explain how distal, proximal, and resilience factors contribute to mental health outcomes among these individuals. Distal factors, such as gender-related discrimination, harassment, violence, and rejection, explain how systemic, cultural, and environmental events lead to overt stress. Proximal factors consist of an individual’s expectation and anticipation of negative and stressful events and the internalization of negative attitudes and prejudice (ie, internalized transphobia). Resilience factors consist of community connectedness and within-group identification and can help mediate the negative effects of distal and proximal factors.
As clinicians, understanding our patients’ experiences and expectations can help us better engage with them and create an environment of safety and healing. Minority stress theory framework suggests that patients may start treatment with distrust or suspicion in light of previous negative experiences. They may also be likely to expect clinicians to be judgmental or to lack understanding of them. The 2015 US Transgender Survey found that 33% of individuals who are TGGD who sought medical treatment in the past year had at least 1 negative experience related to their gender identity (Table 118). Twenty-four percent reported having to educate their clinician about people who are TGGD, while 15% reported the health care professional asked invasive or unnecessary questions about their gender status that were unrelated to their visit. While psychiatry is often distinct from the larger medical field, it is important to understand the negative encounters individuals who are TGGD have likely experienced in medicine, and how those events may skew their feelings about psychiatric treatment. This is especially salient given the higher prevalence of various psychiatric disorders among individuals who are TGGD.18
According to the US Transgender Survey, 39% of participants were currently experiencing serious psychological distress, which is nearly 8 times the rate in the US population (5%).18 When extrapolated, this data indicates that we in psychiatry are likely to work with individuals who identify as TGGD, regardless of our expertise. Additionally, research indicates that having access to gender-affirming care—such as hormone replacement therapy, gender-affirming surgery, voice therapy, and other treatments—greatly improves mental health issues such as anxiety, depression, and suicidality among individuals who are TGGD.19,20 It is in this way we in psychiatry must do more than just care for our patients by becoming advocates for them to receive the care they need and deserve. While at times we may want to stay out of politics and other public discourse, it is becoming increasingly necessary as health care is entrenched in politics.
Clinical applicability
Because individuals who are TGGD experience higher rates of depression, anxiety, substance use, and other psychiatric disorders,14 it is increasingly likely that many clinicians will be presented with opportunities to treat such individuals. Despite high rates of psychiatric disorders, individuals who are TGGD often avoid treatment due to concerns about being pathologized, stereotyped, and/or encountering professionals who lack the knowledge to treat them as they are.21 Several studies recommend clinicians better equip themselves to appropriately provide services to individuals who are TGGD.21 Some advise seeking education to understand the unique needs of these patients and to help stay current with appropriate terminology and language (Table 222). This also implies not relying on patients to educate clinicians in understanding their specific needs and experiences.
Making assumptions about a patient’s identity is one of the most commonly reported issues by individuals who are TGGD. Therefore, it is critical to avoid making assumptions about patients based on binary stereotypes.23,24 We can circumvent these mistakes by asking every patient for their name and pronouns, and introducing ourselves with our pronouns. This illustrates an openness and understanding of the importance of identity and language, and makes it common practice from the outset. Integrating the use of gender-neutral language into paperwork, intake forms, charting, and conversation will also help avoid the pitfalls of misgendering and making false assumptions. This will also allow for support staff, medical assistants, and others to use correct language with patients. Having a patient’s used name and pronouns visible for everyone who works with the patient is necessary to effectively meet the patient’s needs. Additionally, understanding that the range of experiences and needs for individuals who are TGGD is heterogeneous can help reduce assumptions and ensure we are asking for needed information. It is also important to ask for only relevant information needed to provide treatment.
Continue to: Resources are widely available...
Resources are widely available to aid in the care of individuals who are TGGD. In 2022, the World Professional Association for Transgender Health released new guidelines—Standards of Care 8—for working with individuals who are TGGD.25 While these standards include a section dedicated to mental health, they also provide guidelines on education, assessments, specific demographic groups, hormone therapy, primary care, and sexual health. Additionally, while we may not want the role of gatekeeping for individuals to receive gender-affirming care, we work within a health care and insurance system that continues to require psychiatric assessment for such surgeries. In this role, we must do our part to educate ourselves in how to best provide these assessments and letters of support to help patients receive appropriate and life-saving care.
Finally, in order to provide a more comfortable and affirming space for individuals who are TGGD, develop ways to self-assess and monitor the policies, procedures, and language used within your practice, clinic, or institution. Monitoring the language used in charting to ensure consistency with the individual’s gender identity is important for our own understanding of the patient, and for patients to feel seen. This is especially true given patients’ access to medical records under the Cures Act. Moreover, it is essential to be cognizant of how you present clients to others in consultation or care coordination to ensure the patient is identified correctly and consistently by clinicians and staff.
Bottom Line
Understanding the social, cultural, and medical discrimination faced by patients who are transgender or gender diverse can make us better suited to engage and treat these individuals in an affirming and supportive way.
Related Resources
- World Professional Association of Transgender Health (WPATH) Standards of Care—8th edition. https://www.tandfonline.com/doi/pdf/10.1080/26895269.2022.2100644
- The Fenway Institute: National LGBTQIA+ Health Education Center. https://fenwayhealth.org/the-fenway-institute/education/the-national-lgbtia-health-education-center/
1. Morgenroth T, Ryan MK. The effects of gender trouble: an integrative theoretical framework of the perpetuation and disruption of the gender/sex binary. Perspect Psychol Sci. 2021;16(6):1113-1142. doi:10.1177/1745691620902442
2. The Roots of Loneliness Project. Accessed April 8, 2023. https://www.rootsofloneliness.com/gender-identity-loneliness
3. Davies SG. Challenging Gender Norms: Five Genders Among Bugis in Indonesia. Thomson Wadsworth; 2007.
4. Hyde JS. The gender similarities hypothesis. Am Psychol. 2005;60(6):581-592. doi:10.1037/0003-066X.60.6.581
5. Joel D. Beyond the binary: rethinking sex and the brain. Neurosci Biobehav Rev. 2021;122:165-175. doi:10.1016/j.neubiorev.2020.22.018
6. Joel D, Berman Z, Tavor I, et al. Sex beyond the genitalia: the human brain mosaic. Proc Natl Acad Sci U S A. 2015;112(50):15468-15473. doi:10.1073/pnas.1509654112
7. Palmer BF, Clegg DJ. A universally accepted definition of gender will positively impact societal understanding, acceptance, and appropriateness of health care. Mayo Clin Proc. 2020;95(10):2235-2243. doi:10.1016/j.mayocp.2020.01.031
8. Office of Research on Women’s Health. Sex & Gender. National Institutes of Health. Accessed April 6, 2023. https://orwh.od.nih.gov/sex-gender
9. Morgenroth T, Sendén MG, Lindqvist A, et al. Defending the sex/gender binary: the role of gender identification and need for closure. Soc Psychol Pers Sci. 2021;12(5):731-740.
10. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 2nd ed. American Psychiatric Association; 1968.
11. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 3rd ed. American Psychiatric Association; 1980.
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. American Psychiatric Association; 1994.
13. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Publishing; 2013.
14. Wanta JW, Niforatos JD, Durbak E, et al. Mental health diagnoses among transgender patients in the clinical setting: an all-payer electronic health record study. Transgend Health. 2019;4(1):313-315.
15. World Health Organization. International Statistical Classification of Diseases. 11th ed. World Health Organization; 2019.
16. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674-697. doi:10.1037/0033-2909.129.5.674
17. Hendricks ML, Testa RJ. A conceptual framework for clinical work with transgender and gender nonconforming clients: an adaptation of the Minority Stress Model. Profess Psychol: Res Pract. 2012;43(5):460-467. doi:10.1037/a0029597
18. James SE, Herman J, Keisling M, et al. The Report of the 2015 U.S. Transgender Survey. National Center for Transgender Equality; 2016. Accessed April 6, 2023. https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf
19. Almazan AN, Keuroghlian AS. Association between gender-affirming surgeries and mental health outcomes. JAMA Surg. 2021;156(7):611-618. doi:10.1001/jamasurg.2021.0952
20. Tordoff DM, Wanta JW, Collin A, et al. Mental health outcomes in transgender and nonbinary youths receiving gender-affirming care. JAMA Netw Open. 2022;5(2):e220978. doi:10.1001/jamanetworkopen.2022.0978
21. Snow A, Cerel J, Loeffler DN, et al. Barriers to mental health care for transgender and gender-nonconforming adults: a systematic literature review. Health Soc Work. 2019;44(3):149-155. doi:10.1093/hsw/hlz016
22. National LGBTQIA+ Health Education Center. Accessed April 8, 2023. https://www.lgbtqiahealtheducation.org
23. Baldwin A, Dodge B, Schick VR, et al. Transgender and genderqueer individuals’ experiences with health care providers: what’s working, what’s not, and where do we go from here? J Health Care Poor Underserved. 2018;29(4):1300-1318. doi:10.1353/hpu.2018.0097
24. Kcomt L, Gorey KM, Barrett BJ, et al. Healthcare avoidance due to anticipated discrimination among transgender people: a call to create trans-affirmative environments. SSM-Popul Health. 2020;11:100608. doi:10.1016/j.ssmph.2020.100608
25. Coleman E, Radix AE, Bouman WP, et al. Standards of care for the health of transgender and gender diverse people, version 8. Int J Transgender Health. 2022;23(Suppl 1):S1-S259.
Treating patients who are transgender or gender diverse (TGGD) requires an understanding of the social and psychological factors that have a unique impact on this population. As clinicians, it is our responsibility to understand the social, cultural, and political issues our patients face, both historically and currently. In this article, we provide information about the nature of gender and gender identity as separate from biological sex and informed by a person’s perception of self as male, female, nonbinary, or other variation.
Psychiatrists must be aware of how individuals who are TGGD have been perceived, classified, and treated by the medical profession, as this history is often a source of mistrust and a barrier to treatment for patients who need psychiatric care. This includes awareness of the “gatekeeping” role that persists in medical institutions today: applying strict eligibility criteria to determine the “fitness” of individuals who are transgender to pursue medical transition, as compared to the informed-consent model that is widely applied to other medical interventions. Our review of minority stress theory, as applicable to this patient population, provides a context and framework for empathic approaches to care for patients who are TGGD. Recognizing barriers to care and ways in which we can create a supportive environment for treatment will allow for tailored approaches that better fit the unique needs of this patient population.
The gender binary
In Western societies, gender has often been viewed as “binary,” oppositional, and directly correlated with physical sex or presumed anatomy.1 The theory of gender essentialism insists that sex and gender are indistinguishable from one another and provide 2 “natural” and distinct categories: women and men. The “gender/sex” binary refers to the belief that individuals born with 2 X chromosomes will inherently develop into and fulfill the social roles of women, and those born with an X and a Y chromosome will develop into and fulfill the social roles of men.1 In this context, “sex” refers to biological characteristics of individuals, including combinations of sex chromosomes, anatomy, and the development of sex characteristics during puberty. The term “gender” refers to the social, cultural, and behavioral aspects of being a man, woman, both, or neither, and “gender identity” refers to one’s internal, individual sense of self and experience of gender (Figure 12). Many Western cultures are now facing destabilization of the gender/sex binary in social, political, and interpersonal contexts.1 This is perhaps most clearly seen in the battle for self-determination and protection by laws affecting individuals who are transgender as well as the determination of other groups to maintain traditional sex and gender roles, often through political action. Historically, individuals who are TGGD have been present in a variety of cultures. For example, most Native American cultures have revered other-gendered individuals, more recently referred to as “two-spirited.” Similarly, the Bugis people of South Sulawesi, Indonesia, recognize 5 genders that exist on a nonbinary spectrum.3
Despite its prevalence in Western society, scientific evidence for the gender/sex binary is lacking. The gender similarities hypothesis states that males and females are similar in most, but not all, psychological variables and is supported by multiple meta-analyses examining psychological gender differences.4 In a 2005 review of 46 meta-analyses of gender-differences, studied through behavior analysis, effect sizes for gender differences were trivial or small in almost 75% of examined variables.5 Analyzing for internal consistency among studies showing large gender/sex differences, Joel et al6 found that, on measures of personality traits, attitudes, interests, and behaviors were rarely homogenous in the brains of males or females. In fact, <1% of study participants showed only masculine or feminine traits, whereas 55% showed a combination, or mosaic, of these traits.6 These findings were supported by further research in behavioral neuroendocrinology that demonstrated a lack of hormonal evidence for 2 distinct sexes. Both estrogen (the “female” hormone) and testosterone (the “male” hormone) are produced by both biological males and females. Further, levels of estradiol do not significantly differ between males and females, and, in fact, in nonpregnant females, estradiol levels are more similar to those of males than to those of pregnant females.1 In the last decade, imaging studies of the human brain have shown that brain structure and connectivity in individuals who are transgender are more similar to those of their experienced gender than of their natal sex.7 In social analyses of intersex individuals (individuals born with ambiguous physical sex characteristics), surgical assignment into the binary gender system did not improve—and often worsened—feelings of isolation and shame.1
The National Institutes of Health defines gender as “socially constructed and enacted roles and behaviors which occur in a historical and cultural context and vary across societies and time.”8 The World Health Organization (WHO) provides a similar definition, and the evidence to support this exists in social-role theory, social-identity theory, and the stereotype-content model. However, despite evidence disputing a gender/sex binary, this method of classifying individuals into a dyad persists in many areas of modern culture, from gender-specific physical spaces (bathrooms, classrooms, store brands), language (pronouns), and laws. This desire for categorization helps fulfill social and psychological needs of groups and individuals by providing group identities and giving structure to the complexity of modern-day life. Identity and group membership provide a sense of belonging, source of self-esteem, and avoidance of ambiguity. Binary gender stereotypes provide expectations that allow anticipation and prediction of our social environments.9 However, the harm of perpetuating the false gender/sex binary is well documented and includes social and economic penalties, extreme violence, and even death. The field of medicine has not been immune from practices that implicitly endorse the gender/sex connection, as seen in the erroneous use of gender in biomedical writings at the highest levels and evidenced in research examining “gender” differences in disease incidence.
Gender diversity as a pathology
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) has been a source of pathologizing gender diversity since the 1960s, with the introduction of “transsexualism” in DSM-II10 and “gender identity disorder of childhood” in DSM-III.11 These diagnoses were listed under the headings of “sexual deviations” and “psychosexual disorders” in the respective DSM editions. This illustrates how gender diversity was viewed as a mental illness/defect. As the DSM developed through various revisions, so have these diagnoses. DSM-IV used the diagnosis “gender identity disorder.”12 Psychiatry has evolved away from this line of thinking by focusing on the distress from biological sex characteristics that are “incongruent” with an individual’s gender identity, leading to the development of the gender dysphoria diagnosis.13 While this has been a positive step in psychiatry’s efforts to de-pathologize individuals who are gender-diverse, it raises the question: should such diagnoses be included in the DSM at all?
The gender dysphoria diagnosis continues to be needed by many individuals who are TGGD in order to access gender-affirming health care services. Mental health professionals are placed in a gatekeeping role by the expectation that they provide letters of “support” to indicate an individual is of sound mind and consistent gender identity to have services covered by insurance providers. In this way, the insurance industry and the field of medicine continue to believe that individuals who are TGGD need psychiatric permission and/or counsel regarding their gender identity. This can place psychiatry in a role of controlling access to necessary care while also creating a possible distrust in our ability to provide care to patients who are gender-diverse. This is particularly problematic given the high rates of depression, anxiety, trauma, and substance use within these communities.14 In the WHO’s ICD-11, gender dysphoria was changed to gender incongruence and is contained in the category of “Conditions related to sexual health.”15 This indicates continued evolution of how medicine views individuals who are TGGD, and offers hope that psychiatry and the DSM will follow suit.
Continue to: Minority stress theory
Minority stress theory
Ilan Meyer’s minority stress theory explores how cultural and social factors impact mental health functioning (Figure 216). Minority stress theory, which was originally developed for what at the time was described as the lesbian, gay, and bisexual communities, purports that the higher prevalence of mental health disorders among such individuals is likely due to social stigma, discrimination, and stressors associated with minority status. More recently, minority stress theory has been expanded to provide framework for individuals who are TGGD. Hendricks et al17 explain how distal, proximal, and resilience factors contribute to mental health outcomes among these individuals. Distal factors, such as gender-related discrimination, harassment, violence, and rejection, explain how systemic, cultural, and environmental events lead to overt stress. Proximal factors consist of an individual’s expectation and anticipation of negative and stressful events and the internalization of negative attitudes and prejudice (ie, internalized transphobia). Resilience factors consist of community connectedness and within-group identification and can help mediate the negative effects of distal and proximal factors.
As clinicians, understanding our patients’ experiences and expectations can help us better engage with them and create an environment of safety and healing. Minority stress theory framework suggests that patients may start treatment with distrust or suspicion in light of previous negative experiences. They may also be likely to expect clinicians to be judgmental or to lack understanding of them. The 2015 US Transgender Survey found that 33% of individuals who are TGGD who sought medical treatment in the past year had at least 1 negative experience related to their gender identity (Table 118). Twenty-four percent reported having to educate their clinician about people who are TGGD, while 15% reported the health care professional asked invasive or unnecessary questions about their gender status that were unrelated to their visit. While psychiatry is often distinct from the larger medical field, it is important to understand the negative encounters individuals who are TGGD have likely experienced in medicine, and how those events may skew their feelings about psychiatric treatment. This is especially salient given the higher prevalence of various psychiatric disorders among individuals who are TGGD.18
According to the US Transgender Survey, 39% of participants were currently experiencing serious psychological distress, which is nearly 8 times the rate in the US population (5%).18 When extrapolated, this data indicates that we in psychiatry are likely to work with individuals who identify as TGGD, regardless of our expertise. Additionally, research indicates that having access to gender-affirming care—such as hormone replacement therapy, gender-affirming surgery, voice therapy, and other treatments—greatly improves mental health issues such as anxiety, depression, and suicidality among individuals who are TGGD.19,20 It is in this way we in psychiatry must do more than just care for our patients by becoming advocates for them to receive the care they need and deserve. While at times we may want to stay out of politics and other public discourse, it is becoming increasingly necessary as health care is entrenched in politics.
Clinical applicability
Because individuals who are TGGD experience higher rates of depression, anxiety, substance use, and other psychiatric disorders,14 it is increasingly likely that many clinicians will be presented with opportunities to treat such individuals. Despite high rates of psychiatric disorders, individuals who are TGGD often avoid treatment due to concerns about being pathologized, stereotyped, and/or encountering professionals who lack the knowledge to treat them as they are.21 Several studies recommend clinicians better equip themselves to appropriately provide services to individuals who are TGGD.21 Some advise seeking education to understand the unique needs of these patients and to help stay current with appropriate terminology and language (Table 222). This also implies not relying on patients to educate clinicians in understanding their specific needs and experiences.
Making assumptions about a patient’s identity is one of the most commonly reported issues by individuals who are TGGD. Therefore, it is critical to avoid making assumptions about patients based on binary stereotypes.23,24 We can circumvent these mistakes by asking every patient for their name and pronouns, and introducing ourselves with our pronouns. This illustrates an openness and understanding of the importance of identity and language, and makes it common practice from the outset. Integrating the use of gender-neutral language into paperwork, intake forms, charting, and conversation will also help avoid the pitfalls of misgendering and making false assumptions. This will also allow for support staff, medical assistants, and others to use correct language with patients. Having a patient’s used name and pronouns visible for everyone who works with the patient is necessary to effectively meet the patient’s needs. Additionally, understanding that the range of experiences and needs for individuals who are TGGD is heterogeneous can help reduce assumptions and ensure we are asking for needed information. It is also important to ask for only relevant information needed to provide treatment.
Continue to: Resources are widely available...
Resources are widely available to aid in the care of individuals who are TGGD. In 2022, the World Professional Association for Transgender Health released new guidelines—Standards of Care 8—for working with individuals who are TGGD.25 While these standards include a section dedicated to mental health, they also provide guidelines on education, assessments, specific demographic groups, hormone therapy, primary care, and sexual health. Additionally, while we may not want the role of gatekeeping for individuals to receive gender-affirming care, we work within a health care and insurance system that continues to require psychiatric assessment for such surgeries. In this role, we must do our part to educate ourselves in how to best provide these assessments and letters of support to help patients receive appropriate and life-saving care.
Finally, in order to provide a more comfortable and affirming space for individuals who are TGGD, develop ways to self-assess and monitor the policies, procedures, and language used within your practice, clinic, or institution. Monitoring the language used in charting to ensure consistency with the individual’s gender identity is important for our own understanding of the patient, and for patients to feel seen. This is especially true given patients’ access to medical records under the Cures Act. Moreover, it is essential to be cognizant of how you present clients to others in consultation or care coordination to ensure the patient is identified correctly and consistently by clinicians and staff.
Bottom Line
Understanding the social, cultural, and medical discrimination faced by patients who are transgender or gender diverse can make us better suited to engage and treat these individuals in an affirming and supportive way.
Related Resources
- World Professional Association of Transgender Health (WPATH) Standards of Care—8th edition. https://www.tandfonline.com/doi/pdf/10.1080/26895269.2022.2100644
- The Fenway Institute: National LGBTQIA+ Health Education Center. https://fenwayhealth.org/the-fenway-institute/education/the-national-lgbtia-health-education-center/
Treating patients who are transgender or gender diverse (TGGD) requires an understanding of the social and psychological factors that have a unique impact on this population. As clinicians, it is our responsibility to understand the social, cultural, and political issues our patients face, both historically and currently. In this article, we provide information about the nature of gender and gender identity as separate from biological sex and informed by a person’s perception of self as male, female, nonbinary, or other variation.
Psychiatrists must be aware of how individuals who are TGGD have been perceived, classified, and treated by the medical profession, as this history is often a source of mistrust and a barrier to treatment for patients who need psychiatric care. This includes awareness of the “gatekeeping” role that persists in medical institutions today: applying strict eligibility criteria to determine the “fitness” of individuals who are transgender to pursue medical transition, as compared to the informed-consent model that is widely applied to other medical interventions. Our review of minority stress theory, as applicable to this patient population, provides a context and framework for empathic approaches to care for patients who are TGGD. Recognizing barriers to care and ways in which we can create a supportive environment for treatment will allow for tailored approaches that better fit the unique needs of this patient population.
The gender binary
In Western societies, gender has often been viewed as “binary,” oppositional, and directly correlated with physical sex or presumed anatomy.1 The theory of gender essentialism insists that sex and gender are indistinguishable from one another and provide 2 “natural” and distinct categories: women and men. The “gender/sex” binary refers to the belief that individuals born with 2 X chromosomes will inherently develop into and fulfill the social roles of women, and those born with an X and a Y chromosome will develop into and fulfill the social roles of men.1 In this context, “sex” refers to biological characteristics of individuals, including combinations of sex chromosomes, anatomy, and the development of sex characteristics during puberty. The term “gender” refers to the social, cultural, and behavioral aspects of being a man, woman, both, or neither, and “gender identity” refers to one’s internal, individual sense of self and experience of gender (Figure 12). Many Western cultures are now facing destabilization of the gender/sex binary in social, political, and interpersonal contexts.1 This is perhaps most clearly seen in the battle for self-determination and protection by laws affecting individuals who are transgender as well as the determination of other groups to maintain traditional sex and gender roles, often through political action. Historically, individuals who are TGGD have been present in a variety of cultures. For example, most Native American cultures have revered other-gendered individuals, more recently referred to as “two-spirited.” Similarly, the Bugis people of South Sulawesi, Indonesia, recognize 5 genders that exist on a nonbinary spectrum.3
Despite its prevalence in Western society, scientific evidence for the gender/sex binary is lacking. The gender similarities hypothesis states that males and females are similar in most, but not all, psychological variables and is supported by multiple meta-analyses examining psychological gender differences.4 In a 2005 review of 46 meta-analyses of gender-differences, studied through behavior analysis, effect sizes for gender differences were trivial or small in almost 75% of examined variables.5 Analyzing for internal consistency among studies showing large gender/sex differences, Joel et al6 found that, on measures of personality traits, attitudes, interests, and behaviors were rarely homogenous in the brains of males or females. In fact, <1% of study participants showed only masculine or feminine traits, whereas 55% showed a combination, or mosaic, of these traits.6 These findings were supported by further research in behavioral neuroendocrinology that demonstrated a lack of hormonal evidence for 2 distinct sexes. Both estrogen (the “female” hormone) and testosterone (the “male” hormone) are produced by both biological males and females. Further, levels of estradiol do not significantly differ between males and females, and, in fact, in nonpregnant females, estradiol levels are more similar to those of males than to those of pregnant females.1 In the last decade, imaging studies of the human brain have shown that brain structure and connectivity in individuals who are transgender are more similar to those of their experienced gender than of their natal sex.7 In social analyses of intersex individuals (individuals born with ambiguous physical sex characteristics), surgical assignment into the binary gender system did not improve—and often worsened—feelings of isolation and shame.1
The National Institutes of Health defines gender as “socially constructed and enacted roles and behaviors which occur in a historical and cultural context and vary across societies and time.”8 The World Health Organization (WHO) provides a similar definition, and the evidence to support this exists in social-role theory, social-identity theory, and the stereotype-content model. However, despite evidence disputing a gender/sex binary, this method of classifying individuals into a dyad persists in many areas of modern culture, from gender-specific physical spaces (bathrooms, classrooms, store brands), language (pronouns), and laws. This desire for categorization helps fulfill social and psychological needs of groups and individuals by providing group identities and giving structure to the complexity of modern-day life. Identity and group membership provide a sense of belonging, source of self-esteem, and avoidance of ambiguity. Binary gender stereotypes provide expectations that allow anticipation and prediction of our social environments.9 However, the harm of perpetuating the false gender/sex binary is well documented and includes social and economic penalties, extreme violence, and even death. The field of medicine has not been immune from practices that implicitly endorse the gender/sex connection, as seen in the erroneous use of gender in biomedical writings at the highest levels and evidenced in research examining “gender” differences in disease incidence.
Gender diversity as a pathology
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) has been a source of pathologizing gender diversity since the 1960s, with the introduction of “transsexualism” in DSM-II10 and “gender identity disorder of childhood” in DSM-III.11 These diagnoses were listed under the headings of “sexual deviations” and “psychosexual disorders” in the respective DSM editions. This illustrates how gender diversity was viewed as a mental illness/defect. As the DSM developed through various revisions, so have these diagnoses. DSM-IV used the diagnosis “gender identity disorder.”12 Psychiatry has evolved away from this line of thinking by focusing on the distress from biological sex characteristics that are “incongruent” with an individual’s gender identity, leading to the development of the gender dysphoria diagnosis.13 While this has been a positive step in psychiatry’s efforts to de-pathologize individuals who are gender-diverse, it raises the question: should such diagnoses be included in the DSM at all?
The gender dysphoria diagnosis continues to be needed by many individuals who are TGGD in order to access gender-affirming health care services. Mental health professionals are placed in a gatekeeping role by the expectation that they provide letters of “support” to indicate an individual is of sound mind and consistent gender identity to have services covered by insurance providers. In this way, the insurance industry and the field of medicine continue to believe that individuals who are TGGD need psychiatric permission and/or counsel regarding their gender identity. This can place psychiatry in a role of controlling access to necessary care while also creating a possible distrust in our ability to provide care to patients who are gender-diverse. This is particularly problematic given the high rates of depression, anxiety, trauma, and substance use within these communities.14 In the WHO’s ICD-11, gender dysphoria was changed to gender incongruence and is contained in the category of “Conditions related to sexual health.”15 This indicates continued evolution of how medicine views individuals who are TGGD, and offers hope that psychiatry and the DSM will follow suit.
Continue to: Minority stress theory
Minority stress theory
Ilan Meyer’s minority stress theory explores how cultural and social factors impact mental health functioning (Figure 216). Minority stress theory, which was originally developed for what at the time was described as the lesbian, gay, and bisexual communities, purports that the higher prevalence of mental health disorders among such individuals is likely due to social stigma, discrimination, and stressors associated with minority status. More recently, minority stress theory has been expanded to provide framework for individuals who are TGGD. Hendricks et al17 explain how distal, proximal, and resilience factors contribute to mental health outcomes among these individuals. Distal factors, such as gender-related discrimination, harassment, violence, and rejection, explain how systemic, cultural, and environmental events lead to overt stress. Proximal factors consist of an individual’s expectation and anticipation of negative and stressful events and the internalization of negative attitudes and prejudice (ie, internalized transphobia). Resilience factors consist of community connectedness and within-group identification and can help mediate the negative effects of distal and proximal factors.
As clinicians, understanding our patients’ experiences and expectations can help us better engage with them and create an environment of safety and healing. Minority stress theory framework suggests that patients may start treatment with distrust or suspicion in light of previous negative experiences. They may also be likely to expect clinicians to be judgmental or to lack understanding of them. The 2015 US Transgender Survey found that 33% of individuals who are TGGD who sought medical treatment in the past year had at least 1 negative experience related to their gender identity (Table 118). Twenty-four percent reported having to educate their clinician about people who are TGGD, while 15% reported the health care professional asked invasive or unnecessary questions about their gender status that were unrelated to their visit. While psychiatry is often distinct from the larger medical field, it is important to understand the negative encounters individuals who are TGGD have likely experienced in medicine, and how those events may skew their feelings about psychiatric treatment. This is especially salient given the higher prevalence of various psychiatric disorders among individuals who are TGGD.18
According to the US Transgender Survey, 39% of participants were currently experiencing serious psychological distress, which is nearly 8 times the rate in the US population (5%).18 When extrapolated, this data indicates that we in psychiatry are likely to work with individuals who identify as TGGD, regardless of our expertise. Additionally, research indicates that having access to gender-affirming care—such as hormone replacement therapy, gender-affirming surgery, voice therapy, and other treatments—greatly improves mental health issues such as anxiety, depression, and suicidality among individuals who are TGGD.19,20 It is in this way we in psychiatry must do more than just care for our patients by becoming advocates for them to receive the care they need and deserve. While at times we may want to stay out of politics and other public discourse, it is becoming increasingly necessary as health care is entrenched in politics.
Clinical applicability
Because individuals who are TGGD experience higher rates of depression, anxiety, substance use, and other psychiatric disorders,14 it is increasingly likely that many clinicians will be presented with opportunities to treat such individuals. Despite high rates of psychiatric disorders, individuals who are TGGD often avoid treatment due to concerns about being pathologized, stereotyped, and/or encountering professionals who lack the knowledge to treat them as they are.21 Several studies recommend clinicians better equip themselves to appropriately provide services to individuals who are TGGD.21 Some advise seeking education to understand the unique needs of these patients and to help stay current with appropriate terminology and language (Table 222). This also implies not relying on patients to educate clinicians in understanding their specific needs and experiences.
Making assumptions about a patient’s identity is one of the most commonly reported issues by individuals who are TGGD. Therefore, it is critical to avoid making assumptions about patients based on binary stereotypes.23,24 We can circumvent these mistakes by asking every patient for their name and pronouns, and introducing ourselves with our pronouns. This illustrates an openness and understanding of the importance of identity and language, and makes it common practice from the outset. Integrating the use of gender-neutral language into paperwork, intake forms, charting, and conversation will also help avoid the pitfalls of misgendering and making false assumptions. This will also allow for support staff, medical assistants, and others to use correct language with patients. Having a patient’s used name and pronouns visible for everyone who works with the patient is necessary to effectively meet the patient’s needs. Additionally, understanding that the range of experiences and needs for individuals who are TGGD is heterogeneous can help reduce assumptions and ensure we are asking for needed information. It is also important to ask for only relevant information needed to provide treatment.
Continue to: Resources are widely available...
Resources are widely available to aid in the care of individuals who are TGGD. In 2022, the World Professional Association for Transgender Health released new guidelines—Standards of Care 8—for working with individuals who are TGGD.25 While these standards include a section dedicated to mental health, they also provide guidelines on education, assessments, specific demographic groups, hormone therapy, primary care, and sexual health. Additionally, while we may not want the role of gatekeeping for individuals to receive gender-affirming care, we work within a health care and insurance system that continues to require psychiatric assessment for such surgeries. In this role, we must do our part to educate ourselves in how to best provide these assessments and letters of support to help patients receive appropriate and life-saving care.
Finally, in order to provide a more comfortable and affirming space for individuals who are TGGD, develop ways to self-assess and monitor the policies, procedures, and language used within your practice, clinic, or institution. Monitoring the language used in charting to ensure consistency with the individual’s gender identity is important for our own understanding of the patient, and for patients to feel seen. This is especially true given patients’ access to medical records under the Cures Act. Moreover, it is essential to be cognizant of how you present clients to others in consultation or care coordination to ensure the patient is identified correctly and consistently by clinicians and staff.
Bottom Line
Understanding the social, cultural, and medical discrimination faced by patients who are transgender or gender diverse can make us better suited to engage and treat these individuals in an affirming and supportive way.
Related Resources
- World Professional Association of Transgender Health (WPATH) Standards of Care—8th edition. https://www.tandfonline.com/doi/pdf/10.1080/26895269.2022.2100644
- The Fenway Institute: National LGBTQIA+ Health Education Center. https://fenwayhealth.org/the-fenway-institute/education/the-national-lgbtia-health-education-center/
1. Morgenroth T, Ryan MK. The effects of gender trouble: an integrative theoretical framework of the perpetuation and disruption of the gender/sex binary. Perspect Psychol Sci. 2021;16(6):1113-1142. doi:10.1177/1745691620902442
2. The Roots of Loneliness Project. Accessed April 8, 2023. https://www.rootsofloneliness.com/gender-identity-loneliness
3. Davies SG. Challenging Gender Norms: Five Genders Among Bugis in Indonesia. Thomson Wadsworth; 2007.
4. Hyde JS. The gender similarities hypothesis. Am Psychol. 2005;60(6):581-592. doi:10.1037/0003-066X.60.6.581
5. Joel D. Beyond the binary: rethinking sex and the brain. Neurosci Biobehav Rev. 2021;122:165-175. doi:10.1016/j.neubiorev.2020.22.018
6. Joel D, Berman Z, Tavor I, et al. Sex beyond the genitalia: the human brain mosaic. Proc Natl Acad Sci U S A. 2015;112(50):15468-15473. doi:10.1073/pnas.1509654112
7. Palmer BF, Clegg DJ. A universally accepted definition of gender will positively impact societal understanding, acceptance, and appropriateness of health care. Mayo Clin Proc. 2020;95(10):2235-2243. doi:10.1016/j.mayocp.2020.01.031
8. Office of Research on Women’s Health. Sex & Gender. National Institutes of Health. Accessed April 6, 2023. https://orwh.od.nih.gov/sex-gender
9. Morgenroth T, Sendén MG, Lindqvist A, et al. Defending the sex/gender binary: the role of gender identification and need for closure. Soc Psychol Pers Sci. 2021;12(5):731-740.
10. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 2nd ed. American Psychiatric Association; 1968.
11. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 3rd ed. American Psychiatric Association; 1980.
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. American Psychiatric Association; 1994.
13. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Publishing; 2013.
14. Wanta JW, Niforatos JD, Durbak E, et al. Mental health diagnoses among transgender patients in the clinical setting: an all-payer electronic health record study. Transgend Health. 2019;4(1):313-315.
15. World Health Organization. International Statistical Classification of Diseases. 11th ed. World Health Organization; 2019.
16. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674-697. doi:10.1037/0033-2909.129.5.674
17. Hendricks ML, Testa RJ. A conceptual framework for clinical work with transgender and gender nonconforming clients: an adaptation of the Minority Stress Model. Profess Psychol: Res Pract. 2012;43(5):460-467. doi:10.1037/a0029597
18. James SE, Herman J, Keisling M, et al. The Report of the 2015 U.S. Transgender Survey. National Center for Transgender Equality; 2016. Accessed April 6, 2023. https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf
19. Almazan AN, Keuroghlian AS. Association between gender-affirming surgeries and mental health outcomes. JAMA Surg. 2021;156(7):611-618. doi:10.1001/jamasurg.2021.0952
20. Tordoff DM, Wanta JW, Collin A, et al. Mental health outcomes in transgender and nonbinary youths receiving gender-affirming care. JAMA Netw Open. 2022;5(2):e220978. doi:10.1001/jamanetworkopen.2022.0978
21. Snow A, Cerel J, Loeffler DN, et al. Barriers to mental health care for transgender and gender-nonconforming adults: a systematic literature review. Health Soc Work. 2019;44(3):149-155. doi:10.1093/hsw/hlz016
22. National LGBTQIA+ Health Education Center. Accessed April 8, 2023. https://www.lgbtqiahealtheducation.org
23. Baldwin A, Dodge B, Schick VR, et al. Transgender and genderqueer individuals’ experiences with health care providers: what’s working, what’s not, and where do we go from here? J Health Care Poor Underserved. 2018;29(4):1300-1318. doi:10.1353/hpu.2018.0097
24. Kcomt L, Gorey KM, Barrett BJ, et al. Healthcare avoidance due to anticipated discrimination among transgender people: a call to create trans-affirmative environments. SSM-Popul Health. 2020;11:100608. doi:10.1016/j.ssmph.2020.100608
25. Coleman E, Radix AE, Bouman WP, et al. Standards of care for the health of transgender and gender diverse people, version 8. Int J Transgender Health. 2022;23(Suppl 1):S1-S259.
1. Morgenroth T, Ryan MK. The effects of gender trouble: an integrative theoretical framework of the perpetuation and disruption of the gender/sex binary. Perspect Psychol Sci. 2021;16(6):1113-1142. doi:10.1177/1745691620902442
2. The Roots of Loneliness Project. Accessed April 8, 2023. https://www.rootsofloneliness.com/gender-identity-loneliness
3. Davies SG. Challenging Gender Norms: Five Genders Among Bugis in Indonesia. Thomson Wadsworth; 2007.
4. Hyde JS. The gender similarities hypothesis. Am Psychol. 2005;60(6):581-592. doi:10.1037/0003-066X.60.6.581
5. Joel D. Beyond the binary: rethinking sex and the brain. Neurosci Biobehav Rev. 2021;122:165-175. doi:10.1016/j.neubiorev.2020.22.018
6. Joel D, Berman Z, Tavor I, et al. Sex beyond the genitalia: the human brain mosaic. Proc Natl Acad Sci U S A. 2015;112(50):15468-15473. doi:10.1073/pnas.1509654112
7. Palmer BF, Clegg DJ. A universally accepted definition of gender will positively impact societal understanding, acceptance, and appropriateness of health care. Mayo Clin Proc. 2020;95(10):2235-2243. doi:10.1016/j.mayocp.2020.01.031
8. Office of Research on Women’s Health. Sex & Gender. National Institutes of Health. Accessed April 6, 2023. https://orwh.od.nih.gov/sex-gender
9. Morgenroth T, Sendén MG, Lindqvist A, et al. Defending the sex/gender binary: the role of gender identification and need for closure. Soc Psychol Pers Sci. 2021;12(5):731-740.
10. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 2nd ed. American Psychiatric Association; 1968.
11. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 3rd ed. American Psychiatric Association; 1980.
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. American Psychiatric Association; 1994.
13. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Publishing; 2013.
14. Wanta JW, Niforatos JD, Durbak E, et al. Mental health diagnoses among transgender patients in the clinical setting: an all-payer electronic health record study. Transgend Health. 2019;4(1):313-315.
15. World Health Organization. International Statistical Classification of Diseases. 11th ed. World Health Organization; 2019.
16. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674-697. doi:10.1037/0033-2909.129.5.674
17. Hendricks ML, Testa RJ. A conceptual framework for clinical work with transgender and gender nonconforming clients: an adaptation of the Minority Stress Model. Profess Psychol: Res Pract. 2012;43(5):460-467. doi:10.1037/a0029597
18. James SE, Herman J, Keisling M, et al. The Report of the 2015 U.S. Transgender Survey. National Center for Transgender Equality; 2016. Accessed April 6, 2023. https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf
19. Almazan AN, Keuroghlian AS. Association between gender-affirming surgeries and mental health outcomes. JAMA Surg. 2021;156(7):611-618. doi:10.1001/jamasurg.2021.0952
20. Tordoff DM, Wanta JW, Collin A, et al. Mental health outcomes in transgender and nonbinary youths receiving gender-affirming care. JAMA Netw Open. 2022;5(2):e220978. doi:10.1001/jamanetworkopen.2022.0978
21. Snow A, Cerel J, Loeffler DN, et al. Barriers to mental health care for transgender and gender-nonconforming adults: a systematic literature review. Health Soc Work. 2019;44(3):149-155. doi:10.1093/hsw/hlz016
22. National LGBTQIA+ Health Education Center. Accessed April 8, 2023. https://www.lgbtqiahealtheducation.org
23. Baldwin A, Dodge B, Schick VR, et al. Transgender and genderqueer individuals’ experiences with health care providers: what’s working, what’s not, and where do we go from here? J Health Care Poor Underserved. 2018;29(4):1300-1318. doi:10.1353/hpu.2018.0097
24. Kcomt L, Gorey KM, Barrett BJ, et al. Healthcare avoidance due to anticipated discrimination among transgender people: a call to create trans-affirmative environments. SSM-Popul Health. 2020;11:100608. doi:10.1016/j.ssmph.2020.100608
25. Coleman E, Radix AE, Bouman WP, et al. Standards of care for the health of transgender and gender diverse people, version 8. Int J Transgender Health. 2022;23(Suppl 1):S1-S259.
The joys and rewards of an asymmetric life
The benefits of living a balanced life is a very popular concept. But I beg to differ. Balance in one’s life is overrated. Allocating equal time to the various components of one’s life may sound admirable, but it is a recipe for an ordinary life, with no major achievements or a memorable legacy. Scoring a “moonshot” achievement while living a balanced life is highly unlikely.
The benefits of deliberately leading an “asymmetric life” is an epiphany I acquired as a young boy addicted to watching stellar Olympic athletes win gold medals. I dreamed about being the best in the world in a sport, or in something else. As I read about the lives of my Olympic idols, my mind was opened to the fact that each of them led an unbalanced life in the pursuit of their cherished goal to be the best in the world: a gold medalist. I found out that for several years before the Olympic games, these athletes spent a disproportionate amount of their waking time (≥10 hours a day) practicing their sport, strengthening their muscles, building up their stamina, and honing their physical skills and mental toughness. Those sacrifices were necessary—in fact, indispensable—to set themselves apart from us mere mortals. Their social life was quite restricted, and even their educational pursuits had to be reduced or deferred.
I realized at a young age that to be the world’s best athlete, one must lead a purpose-driven life and channel a tremendous amount of time and energy to achieve the cherished goal of an Olympic gold medal. I understood the sacrifices necessary to excel in sports, and concluded the same was also true outside of sports, such as for Nobel Laureates, world-class pianists, prodigious authors, ballet dancers, opera divas, or self-employed entrepreneurs.
As I grew up, I repeatedly heard people praise “the balanced life,” but in my heart, I knew that was a fallacy. I had already decided in high school that I wanted to become a psychiatric physician. I was a premed major in college and very aware that our medical school enrolled only 44 students into the Med 1 class. There were >350 other premed undergraduates. Thus, without hesitation, and with gusto, I deliberately led an unbalanced life, studying countless hours each day to achieve an A grade in all required and elective courses to earn a spot on the Dean’s list. I already had confidence in my academic skills because of my excellent performance in high school, but I was not going to take any chances because I recalled a quote commonly attributed to Thomas Edison: “Genius is 1% inspiration and 99% perspiration.” This is obviously antithetical to living a balanced life.
I matriculated in medical school, and my unbalanced lifestyle continued unabated. Most readers of this journal are fellow physicians who know well the heavy demands of medical school on our lives, in both the preclinical and clinical years. Trying to lead a balanced life during the 4 years of medical school can have disastrous consequences. We all led an “asymmetric existence” with 75% (or more) of our waking hours invested in our careers and 25% (or less) directed to our social lives (and fortunately, our families and friends generally understood). That is what it takes to earn the coveted MD, the equivalent of an Olympic medal for intellectual athletes.
Then came 4 more years of psychiatric residency training, and the long hours of work continued, along with many nights and weekends on call. As a resident, I treasured the modest but precious amount of time I had outside work. I was lucky to have a very supportive and competent wife (a psychologist), who spared me from having to wake up at night to feed our first baby or do various household chores, so I could read the many articles and books on my desk and catch up on my sleep after my frequent night and weekend call shifts.
My unbalanced life continued when I pursued a postresidency fellowship at the National Institutes of Health, where I conducted numerous clinical research trials, brain imaging studies, and postmortem research on a large collection of brains from deceased patients with schizophrenia or bipolar disorder. I worked 12 to 15 hours a day to write up the data I had collected, submit it to scientific journals, and revise it as needed. I knew from the strategic plan I had set for my life that the neuroscience fellowship would launch my academic career, and indeed it did.
Continue to: Reaping the benefits
Reaping the benefits
Fast forward 30 years and you will still find me leading an unbalanced but joyful and fulfilling life. People often ask me how I was able to achieve so much (authoring several hundred scientific publications; publishing 13 books; receiving dozens of grants; editing 3 scientific journals; founding an international schizophrenia society; assuming many leadership positions, including becoming a department chair at 2 universities and being elected to the presidency of several associations; lecturing around the world and making hundreds of scientific presentations at national and international conferences; seeing thousands of patients; teaching, supervising, and mentoring countless medical students, psychiatric residents, and young faculty members; and creating a nonprofit foundation [CURESZ.org] with a former patient who recovered completely after 5 years of home classes and treatment-refractory command hallucinations who then graduated from college with honors in molecular biology after I prescribed clozapine to “cure” her from what was deemed a hopeless and irreversible mental disability1). In all, thanks to my unbalanced life, I have achieved 12 moonshots and each is a major achievement of which I am proud.
My answer to those who ask me how I did all that is simple: I have strategically led an unbalanced life, enjoying every minute of it, and reaping the fruits of my labor. I do not waste an inordinate amount of time watching TV or participating in social media like many others might. And more importantly, despite this unbalanced life, I have been married to my college sweetheart for several decades and have a son and a daughter who are very high achievers and make me proud. I do budget time to regularly take my children and grandchildren on family vacations to exotic locations. I have dinner with my family every night. I am very happy with this so-called unbalanced life. I have received numerous awards and recognitions for my accomplishments, including the Distinguished Scholar Award (the highest academic recognition at The Ohio State University), the coveted Stanley Dean Award for research into schizophrenia from the American College of Psychiatrists, 4 Golden Apple Teaching Awards, and the Daniel Drake Medal, the highest honor that the University of Cincinnati College of Medicine bestows on a faculty member. (Dr. Drake founded the University of Cincinnati College of Medicine 200 years ago, a major moonshot, and among his many accomplishments, he also established the first psychiatric hospital in Ohio, another consequential moonshot. I am sure he led a very productive, unbalanced life, and that is why he is still remembered and revered 200 years later.)
It is said that at the height of his prominence 90 years ago, Sigmund Freud was asked, “What is life all about?” He responded with 2 words: “Liebe und arbeit” (love and work). Importantly, he did not specify which proportions those 2 major functions should occupy in one’s life. It was left up to each individual to make that choice. In the constitution of our country, that freedom of choice is the secret sauce of “the pursuit of happiness.”
1. The CURESZ Foundation. Who we are. Accessed April 11, 2023. https://curesz.org/about/who-we-are/
The benefits of living a balanced life is a very popular concept. But I beg to differ. Balance in one’s life is overrated. Allocating equal time to the various components of one’s life may sound admirable, but it is a recipe for an ordinary life, with no major achievements or a memorable legacy. Scoring a “moonshot” achievement while living a balanced life is highly unlikely.
The benefits of deliberately leading an “asymmetric life” is an epiphany I acquired as a young boy addicted to watching stellar Olympic athletes win gold medals. I dreamed about being the best in the world in a sport, or in something else. As I read about the lives of my Olympic idols, my mind was opened to the fact that each of them led an unbalanced life in the pursuit of their cherished goal to be the best in the world: a gold medalist. I found out that for several years before the Olympic games, these athletes spent a disproportionate amount of their waking time (≥10 hours a day) practicing their sport, strengthening their muscles, building up their stamina, and honing their physical skills and mental toughness. Those sacrifices were necessary—in fact, indispensable—to set themselves apart from us mere mortals. Their social life was quite restricted, and even their educational pursuits had to be reduced or deferred.
I realized at a young age that to be the world’s best athlete, one must lead a purpose-driven life and channel a tremendous amount of time and energy to achieve the cherished goal of an Olympic gold medal. I understood the sacrifices necessary to excel in sports, and concluded the same was also true outside of sports, such as for Nobel Laureates, world-class pianists, prodigious authors, ballet dancers, opera divas, or self-employed entrepreneurs.
As I grew up, I repeatedly heard people praise “the balanced life,” but in my heart, I knew that was a fallacy. I had already decided in high school that I wanted to become a psychiatric physician. I was a premed major in college and very aware that our medical school enrolled only 44 students into the Med 1 class. There were >350 other premed undergraduates. Thus, without hesitation, and with gusto, I deliberately led an unbalanced life, studying countless hours each day to achieve an A grade in all required and elective courses to earn a spot on the Dean’s list. I already had confidence in my academic skills because of my excellent performance in high school, but I was not going to take any chances because I recalled a quote commonly attributed to Thomas Edison: “Genius is 1% inspiration and 99% perspiration.” This is obviously antithetical to living a balanced life.
I matriculated in medical school, and my unbalanced lifestyle continued unabated. Most readers of this journal are fellow physicians who know well the heavy demands of medical school on our lives, in both the preclinical and clinical years. Trying to lead a balanced life during the 4 years of medical school can have disastrous consequences. We all led an “asymmetric existence” with 75% (or more) of our waking hours invested in our careers and 25% (or less) directed to our social lives (and fortunately, our families and friends generally understood). That is what it takes to earn the coveted MD, the equivalent of an Olympic medal for intellectual athletes.
Then came 4 more years of psychiatric residency training, and the long hours of work continued, along with many nights and weekends on call. As a resident, I treasured the modest but precious amount of time I had outside work. I was lucky to have a very supportive and competent wife (a psychologist), who spared me from having to wake up at night to feed our first baby or do various household chores, so I could read the many articles and books on my desk and catch up on my sleep after my frequent night and weekend call shifts.
My unbalanced life continued when I pursued a postresidency fellowship at the National Institutes of Health, where I conducted numerous clinical research trials, brain imaging studies, and postmortem research on a large collection of brains from deceased patients with schizophrenia or bipolar disorder. I worked 12 to 15 hours a day to write up the data I had collected, submit it to scientific journals, and revise it as needed. I knew from the strategic plan I had set for my life that the neuroscience fellowship would launch my academic career, and indeed it did.
Continue to: Reaping the benefits
Reaping the benefits
Fast forward 30 years and you will still find me leading an unbalanced but joyful and fulfilling life. People often ask me how I was able to achieve so much (authoring several hundred scientific publications; publishing 13 books; receiving dozens of grants; editing 3 scientific journals; founding an international schizophrenia society; assuming many leadership positions, including becoming a department chair at 2 universities and being elected to the presidency of several associations; lecturing around the world and making hundreds of scientific presentations at national and international conferences; seeing thousands of patients; teaching, supervising, and mentoring countless medical students, psychiatric residents, and young faculty members; and creating a nonprofit foundation [CURESZ.org] with a former patient who recovered completely after 5 years of home classes and treatment-refractory command hallucinations who then graduated from college with honors in molecular biology after I prescribed clozapine to “cure” her from what was deemed a hopeless and irreversible mental disability1). In all, thanks to my unbalanced life, I have achieved 12 moonshots and each is a major achievement of which I am proud.
My answer to those who ask me how I did all that is simple: I have strategically led an unbalanced life, enjoying every minute of it, and reaping the fruits of my labor. I do not waste an inordinate amount of time watching TV or participating in social media like many others might. And more importantly, despite this unbalanced life, I have been married to my college sweetheart for several decades and have a son and a daughter who are very high achievers and make me proud. I do budget time to regularly take my children and grandchildren on family vacations to exotic locations. I have dinner with my family every night. I am very happy with this so-called unbalanced life. I have received numerous awards and recognitions for my accomplishments, including the Distinguished Scholar Award (the highest academic recognition at The Ohio State University), the coveted Stanley Dean Award for research into schizophrenia from the American College of Psychiatrists, 4 Golden Apple Teaching Awards, and the Daniel Drake Medal, the highest honor that the University of Cincinnati College of Medicine bestows on a faculty member. (Dr. Drake founded the University of Cincinnati College of Medicine 200 years ago, a major moonshot, and among his many accomplishments, he also established the first psychiatric hospital in Ohio, another consequential moonshot. I am sure he led a very productive, unbalanced life, and that is why he is still remembered and revered 200 years later.)
It is said that at the height of his prominence 90 years ago, Sigmund Freud was asked, “What is life all about?” He responded with 2 words: “Liebe und arbeit” (love and work). Importantly, he did not specify which proportions those 2 major functions should occupy in one’s life. It was left up to each individual to make that choice. In the constitution of our country, that freedom of choice is the secret sauce of “the pursuit of happiness.”
The benefits of living a balanced life is a very popular concept. But I beg to differ. Balance in one’s life is overrated. Allocating equal time to the various components of one’s life may sound admirable, but it is a recipe for an ordinary life, with no major achievements or a memorable legacy. Scoring a “moonshot” achievement while living a balanced life is highly unlikely.
The benefits of deliberately leading an “asymmetric life” is an epiphany I acquired as a young boy addicted to watching stellar Olympic athletes win gold medals. I dreamed about being the best in the world in a sport, or in something else. As I read about the lives of my Olympic idols, my mind was opened to the fact that each of them led an unbalanced life in the pursuit of their cherished goal to be the best in the world: a gold medalist. I found out that for several years before the Olympic games, these athletes spent a disproportionate amount of their waking time (≥10 hours a day) practicing their sport, strengthening their muscles, building up their stamina, and honing their physical skills and mental toughness. Those sacrifices were necessary—in fact, indispensable—to set themselves apart from us mere mortals. Their social life was quite restricted, and even their educational pursuits had to be reduced or deferred.
I realized at a young age that to be the world’s best athlete, one must lead a purpose-driven life and channel a tremendous amount of time and energy to achieve the cherished goal of an Olympic gold medal. I understood the sacrifices necessary to excel in sports, and concluded the same was also true outside of sports, such as for Nobel Laureates, world-class pianists, prodigious authors, ballet dancers, opera divas, or self-employed entrepreneurs.
As I grew up, I repeatedly heard people praise “the balanced life,” but in my heart, I knew that was a fallacy. I had already decided in high school that I wanted to become a psychiatric physician. I was a premed major in college and very aware that our medical school enrolled only 44 students into the Med 1 class. There were >350 other premed undergraduates. Thus, without hesitation, and with gusto, I deliberately led an unbalanced life, studying countless hours each day to achieve an A grade in all required and elective courses to earn a spot on the Dean’s list. I already had confidence in my academic skills because of my excellent performance in high school, but I was not going to take any chances because I recalled a quote commonly attributed to Thomas Edison: “Genius is 1% inspiration and 99% perspiration.” This is obviously antithetical to living a balanced life.
I matriculated in medical school, and my unbalanced lifestyle continued unabated. Most readers of this journal are fellow physicians who know well the heavy demands of medical school on our lives, in both the preclinical and clinical years. Trying to lead a balanced life during the 4 years of medical school can have disastrous consequences. We all led an “asymmetric existence” with 75% (or more) of our waking hours invested in our careers and 25% (or less) directed to our social lives (and fortunately, our families and friends generally understood). That is what it takes to earn the coveted MD, the equivalent of an Olympic medal for intellectual athletes.
Then came 4 more years of psychiatric residency training, and the long hours of work continued, along with many nights and weekends on call. As a resident, I treasured the modest but precious amount of time I had outside work. I was lucky to have a very supportive and competent wife (a psychologist), who spared me from having to wake up at night to feed our first baby or do various household chores, so I could read the many articles and books on my desk and catch up on my sleep after my frequent night and weekend call shifts.
My unbalanced life continued when I pursued a postresidency fellowship at the National Institutes of Health, where I conducted numerous clinical research trials, brain imaging studies, and postmortem research on a large collection of brains from deceased patients with schizophrenia or bipolar disorder. I worked 12 to 15 hours a day to write up the data I had collected, submit it to scientific journals, and revise it as needed. I knew from the strategic plan I had set for my life that the neuroscience fellowship would launch my academic career, and indeed it did.
Continue to: Reaping the benefits
Reaping the benefits
Fast forward 30 years and you will still find me leading an unbalanced but joyful and fulfilling life. People often ask me how I was able to achieve so much (authoring several hundred scientific publications; publishing 13 books; receiving dozens of grants; editing 3 scientific journals; founding an international schizophrenia society; assuming many leadership positions, including becoming a department chair at 2 universities and being elected to the presidency of several associations; lecturing around the world and making hundreds of scientific presentations at national and international conferences; seeing thousands of patients; teaching, supervising, and mentoring countless medical students, psychiatric residents, and young faculty members; and creating a nonprofit foundation [CURESZ.org] with a former patient who recovered completely after 5 years of home classes and treatment-refractory command hallucinations who then graduated from college with honors in molecular biology after I prescribed clozapine to “cure” her from what was deemed a hopeless and irreversible mental disability1). In all, thanks to my unbalanced life, I have achieved 12 moonshots and each is a major achievement of which I am proud.
My answer to those who ask me how I did all that is simple: I have strategically led an unbalanced life, enjoying every minute of it, and reaping the fruits of my labor. I do not waste an inordinate amount of time watching TV or participating in social media like many others might. And more importantly, despite this unbalanced life, I have been married to my college sweetheart for several decades and have a son and a daughter who are very high achievers and make me proud. I do budget time to regularly take my children and grandchildren on family vacations to exotic locations. I have dinner with my family every night. I am very happy with this so-called unbalanced life. I have received numerous awards and recognitions for my accomplishments, including the Distinguished Scholar Award (the highest academic recognition at The Ohio State University), the coveted Stanley Dean Award for research into schizophrenia from the American College of Psychiatrists, 4 Golden Apple Teaching Awards, and the Daniel Drake Medal, the highest honor that the University of Cincinnati College of Medicine bestows on a faculty member. (Dr. Drake founded the University of Cincinnati College of Medicine 200 years ago, a major moonshot, and among his many accomplishments, he also established the first psychiatric hospital in Ohio, another consequential moonshot. I am sure he led a very productive, unbalanced life, and that is why he is still remembered and revered 200 years later.)
It is said that at the height of his prominence 90 years ago, Sigmund Freud was asked, “What is life all about?” He responded with 2 words: “Liebe und arbeit” (love and work). Importantly, he did not specify which proportions those 2 major functions should occupy in one’s life. It was left up to each individual to make that choice. In the constitution of our country, that freedom of choice is the secret sauce of “the pursuit of happiness.”
1. The CURESZ Foundation. Who we are. Accessed April 11, 2023. https://curesz.org/about/who-we-are/
1. The CURESZ Foundation. Who we are. Accessed April 11, 2023. https://curesz.org/about/who-we-are/
Ethics do not end at the bedside: A commentary about scientific authorship
Sound moral principles are essential in the development of all physicians. Given how heavily each clinical encounter is laden with ethical implications, this is taught early in medical school. The medical student and resident physician must be able to make ethical and moral decisions on a consistent basis.
Speaking as a psychiatrist in training, there is an intimate relationship between psychiatry and moral questions.1 Issues such as determining an individual’s ability to make decisions about their medical care, hospitalizing patients against their will, and involuntarily administering medication are an almost-daily occurrence.2 Physicians, especially those who practice psychiatric medicine, must be ethically grounded to properly make these difficult but common decisions. It is also imperative that residents are given proper guidance in ethical practice in structured didactics and hands-on training.
However, many residents may be unfamiliar with ethics in research, more specifically ethical authorship. While some trainees might have participated in scholarly activities before residency, residency is the time to discover one’s interests, and residents are encouraged to engage in research. Unfortunately, many of the considerations surrounding ethical authorship are not emphasized, and questionable practices are common.3 In this article, I summarize the different faces of unethical authorship, and call for a greater emphasis on ethical authorship in medical residency training programs.
What drives unethical authorship practices
One of the main drivers for the increase in unethical practices is the need to publish to advance one’s academic career. The academic principle of “publish or perish” pressures many faculty researchers.3 The impact of this expectation plays a significant role in potentially unethical authorship practices, and also has increased the number of publications of mediocre quality or fraudulent data.4 This mindset has also seeped into the clinical world because promotions and financial bonuses are incentives for attending physicians to perform scholarly work. Due to these incentives and pressures, a senior academician might compel a junior researcher to include them as a coauthor on the junior researcher’s paper, even when the senior’s contributions to the paper might be limited.5
Most journals have specific criteria for authorship. The International Committee of Medical Journal Editors (ICMJE) has 4 core criteria for authorship: 1) substantial contributions to the conception or design of the work, or the acquisition, analysis, or interpretation of data for the work; 2) drafting the work or revising it critically for important intellectual content; 3) providing final approval of the version to be published, and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.5,6 One survey found that in certain journals, approximately 15% of authors met full ICMJE authorship criteria, while one-half claimed there were substantial contributions but did not state anything more specific.7
There are several types of authorship abuse.5 Gift authorship is when authorship is awarded to a friend either out of respect or in hopes that friend will return the favor (quid pro quo). Ghost authorship occurs when a third party commissions an author to write or help write a paper (eg, when a pharmaceutical company hires writers to produce a paper about a medication they manufacture) or when legitimate authors are denied recognition on a paper. Honorary authorship occurs when authorship is granted with the hope that the reputation of the honorary author will increase the chances of the paper getting published and possibly boost citations.
While these forms of authorship abuse occur with unsettling frequency, they might not be common among physician trainees who do not engage in full-time research.5 Resident authors might be more likely to experience coercive authorship.
Continue to: Coercive authorship is when...
Coercive authorship is when an individual in a superior position (such as an attending physician) forces their name onto a paper of a junior individual (such as a resident). Kwok8 called this “The White Bull effect,” based on Greek mythology in which Zeus transformed himself into a white bull to seduce Europa. The White Bull represents the predatory nature of the senior individual who exploits ambiguous institutional research regulations to their benefit.8 They stretch out the ICMJE criteria, only superficially satisfying them to justify authorship. In this scenario, the attending physician with promotional incentives notices the work of a resident and demands authorship, given their role as the “supervising” physician (akin to general supervision of a research group). This is not justification for authorship per the ICMJE or any major medical journal criteria. However, a resident with limited research experience may agree to include the attending as a coauthor for a variety of reasons, including fear of a poor performance evaluation or professionalism complaints, or just to maintain a positive working relationship.
Serious implications
While there are countless reasons to be concerned about this behavior, the central issue is the attending physician’s role to train and/or mentor the resident. As previously stated, a physician—especially one practicing psychiatric medicine—must be of morally sound mind. A resident being taught unethical behaviors by their attending physician has dangerous implications. Academic dishonesty does not occur in vacuum. It is likely that dishonest and unethical behavior in research matters can cross over into the clinical arena. One study found that individuals who exhibit dishonest academic behavior are more likely to violate workplace policies.9 Also, these behaviors lead to increased moral disengagement in all areas.10,11 Imagining a morally disengaged attending psychiatrist practicing medicine and training the next generation of psychiatrists is unsettling.
My hope is that residency programs discourage this detrimental conduct in their departments and support those trying to uphold integrity.
1. Scher S, Kozlowska K. Teaching ethics in psychiatry: time to reset. Harv Rev Psychiatry. 2020;28(5):328-333. doi:10.1097/HRP.0000000000000258
2. Allen NG, Khan JS, Alzahri MS, et al. Ethical issues in emergency psychiatry. Emerg Med Clin North Am. 2015;33(4):863-874. doi:10.1016/j.emc.2015.07.012
3. Pfleegor AG, Katz M, Bowers MT. Publish, perish, or salami slice? Authorship ethics in an emerging field. Journal of Business Ethics. 2019;156(1):189-208.
4. Rivera H. Fake peer review and inappropriate authorship are real evils. J Korean Med Sci. 2018;34(2):e6. doi:10.3346/jkms.2019.34.e6
5. Strange K. Authorship: why not just toss a coin? Am J Physiol Cell Physiol. 2008;295(3):C567-C575. doi:10.1152/ajpcell.00208.2008
6. Ali MJ. ICMJE criteria for authorship: why the criticisms are not justified? Graefes Arch Clin Exp Ophthalmol. 2021;259(2):289-290. doi:10.1007/s00417-020-04825-2
7. Malički M, Jerončić A, Marušić M, et al. Why do you think you should be the author on this manuscript? Analysis of open-ended responses of authors in a general medical journal. BMC Med Res Methodol. 2012;12:189. doi:10.1186/1471-2288-12-189
8. Kwok LS. The White Bull effect: abusive coauthorship and publication parasitism. J Med Ethics. 2005;31(9):554-556. doi:10.1136/jme.2004.010553
9. Harding TS, Carpenter DD, Finelli CJ, et al. Does academic dishonesty relate to unethical behavior in professional practice? An exploratory study. Sci Eng Ethics. 2004;10(2):311-324. doi:10.1007/s11948-004-0027-3
10. Shu LL, Gino F. Sweeping dishonesty under the rug: how unethical actions lead to forgetting of moral rules. J Pers Soc Psychol. 2012;102(6):1164-1177. doi:10.1037/a0028381
11. Shu LL, Gino F, Bazerman MH. Dishonest deed, clear conscience: when cheating leads to moral disengagement and motivated forgetting. Pers Soc Psychol Bull. 2011;37(3):330-349. doi:10.1177/0146167211398138
Sound moral principles are essential in the development of all physicians. Given how heavily each clinical encounter is laden with ethical implications, this is taught early in medical school. The medical student and resident physician must be able to make ethical and moral decisions on a consistent basis.
Speaking as a psychiatrist in training, there is an intimate relationship between psychiatry and moral questions.1 Issues such as determining an individual’s ability to make decisions about their medical care, hospitalizing patients against their will, and involuntarily administering medication are an almost-daily occurrence.2 Physicians, especially those who practice psychiatric medicine, must be ethically grounded to properly make these difficult but common decisions. It is also imperative that residents are given proper guidance in ethical practice in structured didactics and hands-on training.
However, many residents may be unfamiliar with ethics in research, more specifically ethical authorship. While some trainees might have participated in scholarly activities before residency, residency is the time to discover one’s interests, and residents are encouraged to engage in research. Unfortunately, many of the considerations surrounding ethical authorship are not emphasized, and questionable practices are common.3 In this article, I summarize the different faces of unethical authorship, and call for a greater emphasis on ethical authorship in medical residency training programs.
What drives unethical authorship practices
One of the main drivers for the increase in unethical practices is the need to publish to advance one’s academic career. The academic principle of “publish or perish” pressures many faculty researchers.3 The impact of this expectation plays a significant role in potentially unethical authorship practices, and also has increased the number of publications of mediocre quality or fraudulent data.4 This mindset has also seeped into the clinical world because promotions and financial bonuses are incentives for attending physicians to perform scholarly work. Due to these incentives and pressures, a senior academician might compel a junior researcher to include them as a coauthor on the junior researcher’s paper, even when the senior’s contributions to the paper might be limited.5
Most journals have specific criteria for authorship. The International Committee of Medical Journal Editors (ICMJE) has 4 core criteria for authorship: 1) substantial contributions to the conception or design of the work, or the acquisition, analysis, or interpretation of data for the work; 2) drafting the work or revising it critically for important intellectual content; 3) providing final approval of the version to be published, and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.5,6 One survey found that in certain journals, approximately 15% of authors met full ICMJE authorship criteria, while one-half claimed there were substantial contributions but did not state anything more specific.7
There are several types of authorship abuse.5 Gift authorship is when authorship is awarded to a friend either out of respect or in hopes that friend will return the favor (quid pro quo). Ghost authorship occurs when a third party commissions an author to write or help write a paper (eg, when a pharmaceutical company hires writers to produce a paper about a medication they manufacture) or when legitimate authors are denied recognition on a paper. Honorary authorship occurs when authorship is granted with the hope that the reputation of the honorary author will increase the chances of the paper getting published and possibly boost citations.
While these forms of authorship abuse occur with unsettling frequency, they might not be common among physician trainees who do not engage in full-time research.5 Resident authors might be more likely to experience coercive authorship.
Continue to: Coercive authorship is when...
Coercive authorship is when an individual in a superior position (such as an attending physician) forces their name onto a paper of a junior individual (such as a resident). Kwok8 called this “The White Bull effect,” based on Greek mythology in which Zeus transformed himself into a white bull to seduce Europa. The White Bull represents the predatory nature of the senior individual who exploits ambiguous institutional research regulations to their benefit.8 They stretch out the ICMJE criteria, only superficially satisfying them to justify authorship. In this scenario, the attending physician with promotional incentives notices the work of a resident and demands authorship, given their role as the “supervising” physician (akin to general supervision of a research group). This is not justification for authorship per the ICMJE or any major medical journal criteria. However, a resident with limited research experience may agree to include the attending as a coauthor for a variety of reasons, including fear of a poor performance evaluation or professionalism complaints, or just to maintain a positive working relationship.
Serious implications
While there are countless reasons to be concerned about this behavior, the central issue is the attending physician’s role to train and/or mentor the resident. As previously stated, a physician—especially one practicing psychiatric medicine—must be of morally sound mind. A resident being taught unethical behaviors by their attending physician has dangerous implications. Academic dishonesty does not occur in vacuum. It is likely that dishonest and unethical behavior in research matters can cross over into the clinical arena. One study found that individuals who exhibit dishonest academic behavior are more likely to violate workplace policies.9 Also, these behaviors lead to increased moral disengagement in all areas.10,11 Imagining a morally disengaged attending psychiatrist practicing medicine and training the next generation of psychiatrists is unsettling.
My hope is that residency programs discourage this detrimental conduct in their departments and support those trying to uphold integrity.
Sound moral principles are essential in the development of all physicians. Given how heavily each clinical encounter is laden with ethical implications, this is taught early in medical school. The medical student and resident physician must be able to make ethical and moral decisions on a consistent basis.
Speaking as a psychiatrist in training, there is an intimate relationship between psychiatry and moral questions.1 Issues such as determining an individual’s ability to make decisions about their medical care, hospitalizing patients against their will, and involuntarily administering medication are an almost-daily occurrence.2 Physicians, especially those who practice psychiatric medicine, must be ethically grounded to properly make these difficult but common decisions. It is also imperative that residents are given proper guidance in ethical practice in structured didactics and hands-on training.
However, many residents may be unfamiliar with ethics in research, more specifically ethical authorship. While some trainees might have participated in scholarly activities before residency, residency is the time to discover one’s interests, and residents are encouraged to engage in research. Unfortunately, many of the considerations surrounding ethical authorship are not emphasized, and questionable practices are common.3 In this article, I summarize the different faces of unethical authorship, and call for a greater emphasis on ethical authorship in medical residency training programs.
What drives unethical authorship practices
One of the main drivers for the increase in unethical practices is the need to publish to advance one’s academic career. The academic principle of “publish or perish” pressures many faculty researchers.3 The impact of this expectation plays a significant role in potentially unethical authorship practices, and also has increased the number of publications of mediocre quality or fraudulent data.4 This mindset has also seeped into the clinical world because promotions and financial bonuses are incentives for attending physicians to perform scholarly work. Due to these incentives and pressures, a senior academician might compel a junior researcher to include them as a coauthor on the junior researcher’s paper, even when the senior’s contributions to the paper might be limited.5
Most journals have specific criteria for authorship. The International Committee of Medical Journal Editors (ICMJE) has 4 core criteria for authorship: 1) substantial contributions to the conception or design of the work, or the acquisition, analysis, or interpretation of data for the work; 2) drafting the work or revising it critically for important intellectual content; 3) providing final approval of the version to be published, and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.5,6 One survey found that in certain journals, approximately 15% of authors met full ICMJE authorship criteria, while one-half claimed there were substantial contributions but did not state anything more specific.7
There are several types of authorship abuse.5 Gift authorship is when authorship is awarded to a friend either out of respect or in hopes that friend will return the favor (quid pro quo). Ghost authorship occurs when a third party commissions an author to write or help write a paper (eg, when a pharmaceutical company hires writers to produce a paper about a medication they manufacture) or when legitimate authors are denied recognition on a paper. Honorary authorship occurs when authorship is granted with the hope that the reputation of the honorary author will increase the chances of the paper getting published and possibly boost citations.
While these forms of authorship abuse occur with unsettling frequency, they might not be common among physician trainees who do not engage in full-time research.5 Resident authors might be more likely to experience coercive authorship.
Continue to: Coercive authorship is when...
Coercive authorship is when an individual in a superior position (such as an attending physician) forces their name onto a paper of a junior individual (such as a resident). Kwok8 called this “The White Bull effect,” based on Greek mythology in which Zeus transformed himself into a white bull to seduce Europa. The White Bull represents the predatory nature of the senior individual who exploits ambiguous institutional research regulations to their benefit.8 They stretch out the ICMJE criteria, only superficially satisfying them to justify authorship. In this scenario, the attending physician with promotional incentives notices the work of a resident and demands authorship, given their role as the “supervising” physician (akin to general supervision of a research group). This is not justification for authorship per the ICMJE or any major medical journal criteria. However, a resident with limited research experience may agree to include the attending as a coauthor for a variety of reasons, including fear of a poor performance evaluation or professionalism complaints, or just to maintain a positive working relationship.
Serious implications
While there are countless reasons to be concerned about this behavior, the central issue is the attending physician’s role to train and/or mentor the resident. As previously stated, a physician—especially one practicing psychiatric medicine—must be of morally sound mind. A resident being taught unethical behaviors by their attending physician has dangerous implications. Academic dishonesty does not occur in vacuum. It is likely that dishonest and unethical behavior in research matters can cross over into the clinical arena. One study found that individuals who exhibit dishonest academic behavior are more likely to violate workplace policies.9 Also, these behaviors lead to increased moral disengagement in all areas.10,11 Imagining a morally disengaged attending psychiatrist practicing medicine and training the next generation of psychiatrists is unsettling.
My hope is that residency programs discourage this detrimental conduct in their departments and support those trying to uphold integrity.
1. Scher S, Kozlowska K. Teaching ethics in psychiatry: time to reset. Harv Rev Psychiatry. 2020;28(5):328-333. doi:10.1097/HRP.0000000000000258
2. Allen NG, Khan JS, Alzahri MS, et al. Ethical issues in emergency psychiatry. Emerg Med Clin North Am. 2015;33(4):863-874. doi:10.1016/j.emc.2015.07.012
3. Pfleegor AG, Katz M, Bowers MT. Publish, perish, or salami slice? Authorship ethics in an emerging field. Journal of Business Ethics. 2019;156(1):189-208.
4. Rivera H. Fake peer review and inappropriate authorship are real evils. J Korean Med Sci. 2018;34(2):e6. doi:10.3346/jkms.2019.34.e6
5. Strange K. Authorship: why not just toss a coin? Am J Physiol Cell Physiol. 2008;295(3):C567-C575. doi:10.1152/ajpcell.00208.2008
6. Ali MJ. ICMJE criteria for authorship: why the criticisms are not justified? Graefes Arch Clin Exp Ophthalmol. 2021;259(2):289-290. doi:10.1007/s00417-020-04825-2
7. Malički M, Jerončić A, Marušić M, et al. Why do you think you should be the author on this manuscript? Analysis of open-ended responses of authors in a general medical journal. BMC Med Res Methodol. 2012;12:189. doi:10.1186/1471-2288-12-189
8. Kwok LS. The White Bull effect: abusive coauthorship and publication parasitism. J Med Ethics. 2005;31(9):554-556. doi:10.1136/jme.2004.010553
9. Harding TS, Carpenter DD, Finelli CJ, et al. Does academic dishonesty relate to unethical behavior in professional practice? An exploratory study. Sci Eng Ethics. 2004;10(2):311-324. doi:10.1007/s11948-004-0027-3
10. Shu LL, Gino F. Sweeping dishonesty under the rug: how unethical actions lead to forgetting of moral rules. J Pers Soc Psychol. 2012;102(6):1164-1177. doi:10.1037/a0028381
11. Shu LL, Gino F, Bazerman MH. Dishonest deed, clear conscience: when cheating leads to moral disengagement and motivated forgetting. Pers Soc Psychol Bull. 2011;37(3):330-349. doi:10.1177/0146167211398138
1. Scher S, Kozlowska K. Teaching ethics in psychiatry: time to reset. Harv Rev Psychiatry. 2020;28(5):328-333. doi:10.1097/HRP.0000000000000258
2. Allen NG, Khan JS, Alzahri MS, et al. Ethical issues in emergency psychiatry. Emerg Med Clin North Am. 2015;33(4):863-874. doi:10.1016/j.emc.2015.07.012
3. Pfleegor AG, Katz M, Bowers MT. Publish, perish, or salami slice? Authorship ethics in an emerging field. Journal of Business Ethics. 2019;156(1):189-208.
4. Rivera H. Fake peer review and inappropriate authorship are real evils. J Korean Med Sci. 2018;34(2):e6. doi:10.3346/jkms.2019.34.e6
5. Strange K. Authorship: why not just toss a coin? Am J Physiol Cell Physiol. 2008;295(3):C567-C575. doi:10.1152/ajpcell.00208.2008
6. Ali MJ. ICMJE criteria for authorship: why the criticisms are not justified? Graefes Arch Clin Exp Ophthalmol. 2021;259(2):289-290. doi:10.1007/s00417-020-04825-2
7. Malički M, Jerončić A, Marušić M, et al. Why do you think you should be the author on this manuscript? Analysis of open-ended responses of authors in a general medical journal. BMC Med Res Methodol. 2012;12:189. doi:10.1186/1471-2288-12-189
8. Kwok LS. The White Bull effect: abusive coauthorship and publication parasitism. J Med Ethics. 2005;31(9):554-556. doi:10.1136/jme.2004.010553
9. Harding TS, Carpenter DD, Finelli CJ, et al. Does academic dishonesty relate to unethical behavior in professional practice? An exploratory study. Sci Eng Ethics. 2004;10(2):311-324. doi:10.1007/s11948-004-0027-3
10. Shu LL, Gino F. Sweeping dishonesty under the rug: how unethical actions lead to forgetting of moral rules. J Pers Soc Psychol. 2012;102(6):1164-1177. doi:10.1037/a0028381
11. Shu LL, Gino F, Bazerman MH. Dishonest deed, clear conscience: when cheating leads to moral disengagement and motivated forgetting. Pers Soc Psychol Bull. 2011;37(3):330-349. doi:10.1177/0146167211398138
Chronicling gastroenterology’s history
Each May, the gastroenterology community gathers for Digestive Disease Week® to be inspired, meet up with friends and colleagues from across the globe, and learn the latest in scientific advances to inform how we care for our patients in the clinic, on inpatient wards, and in our endoscopy suites. DDW® 2023, held in the Windy City of Chicago, does not disappoint. This year’s conference features a dizzying array of offerings, including 3,500 poster and ePoster presentations and 1,300 abstract lectures, as well as the perennially well-attended AGA Post-Graduate Course and other offerings.
This year’s AGA Presidential Plenary, hosted on May 8 by outgoing AGA President Dr. John M. Carethers, is not to be missed. The session will honor the 125-year history of the AGA and recognizes the barriers overcome in diversifying the practice of gastroenterology. You will learn about individuals such as Alexis St. Martin, MD; Basil Hirschowitz, MD, AGAF; Leonidas Berry, MD; Sadye Curry, MD; and, other barrier-breakers in GI who have been instrumental in shaping the modern practice of gastroenterology. I hope you will join me in attending.
In this month’s issue of GIHN, we introduce the winner of the 2023 AGA Shark Tank innovation competition, which was held during the 2023 AGA Tech Summit. We also report on a landmark phase 4, double-blind randomized trial published in the New England Journal of Medicine demonstrating the effectiveness of vedolizumab in inducing remission in chronic pouchitis, and a new AGA clinical practice update on the role of EUS-guided gallbladder drainage in acute cholecystitis.
The AGA Government Affairs Committee also updates us on their advocacy to reform prior authorization policies affecting GI practice, and explains how you can assist in these efforts. In our Member Spotlight, we introduce you to gastroenterologist Sharmila Anandasabapthy, MD, who shares her passion for global health and the one piece of career advice she’s glad she ignored.
Finally, GIHN Associate Editor Dr. Avi Ketwaroo presents our quarterly Perspectives column highlighting differing approaches to clinical management of pancreatic cystic lesions. We hope you enjoy all of the exciting content featured in this issue and look forward to seeing you in Chicago (or, virtually) for DDW.
Megan A. Adams, MD, JD, MSc
Editor-in-Chief
Each May, the gastroenterology community gathers for Digestive Disease Week® to be inspired, meet up with friends and colleagues from across the globe, and learn the latest in scientific advances to inform how we care for our patients in the clinic, on inpatient wards, and in our endoscopy suites. DDW® 2023, held in the Windy City of Chicago, does not disappoint. This year’s conference features a dizzying array of offerings, including 3,500 poster and ePoster presentations and 1,300 abstract lectures, as well as the perennially well-attended AGA Post-Graduate Course and other offerings.
This year’s AGA Presidential Plenary, hosted on May 8 by outgoing AGA President Dr. John M. Carethers, is not to be missed. The session will honor the 125-year history of the AGA and recognizes the barriers overcome in diversifying the practice of gastroenterology. You will learn about individuals such as Alexis St. Martin, MD; Basil Hirschowitz, MD, AGAF; Leonidas Berry, MD; Sadye Curry, MD; and, other barrier-breakers in GI who have been instrumental in shaping the modern practice of gastroenterology. I hope you will join me in attending.
In this month’s issue of GIHN, we introduce the winner of the 2023 AGA Shark Tank innovation competition, which was held during the 2023 AGA Tech Summit. We also report on a landmark phase 4, double-blind randomized trial published in the New England Journal of Medicine demonstrating the effectiveness of vedolizumab in inducing remission in chronic pouchitis, and a new AGA clinical practice update on the role of EUS-guided gallbladder drainage in acute cholecystitis.
The AGA Government Affairs Committee also updates us on their advocacy to reform prior authorization policies affecting GI practice, and explains how you can assist in these efforts. In our Member Spotlight, we introduce you to gastroenterologist Sharmila Anandasabapthy, MD, who shares her passion for global health and the one piece of career advice she’s glad she ignored.
Finally, GIHN Associate Editor Dr. Avi Ketwaroo presents our quarterly Perspectives column highlighting differing approaches to clinical management of pancreatic cystic lesions. We hope you enjoy all of the exciting content featured in this issue and look forward to seeing you in Chicago (or, virtually) for DDW.
Megan A. Adams, MD, JD, MSc
Editor-in-Chief
Each May, the gastroenterology community gathers for Digestive Disease Week® to be inspired, meet up with friends and colleagues from across the globe, and learn the latest in scientific advances to inform how we care for our patients in the clinic, on inpatient wards, and in our endoscopy suites. DDW® 2023, held in the Windy City of Chicago, does not disappoint. This year’s conference features a dizzying array of offerings, including 3,500 poster and ePoster presentations and 1,300 abstract lectures, as well as the perennially well-attended AGA Post-Graduate Course and other offerings.
This year’s AGA Presidential Plenary, hosted on May 8 by outgoing AGA President Dr. John M. Carethers, is not to be missed. The session will honor the 125-year history of the AGA and recognizes the barriers overcome in diversifying the practice of gastroenterology. You will learn about individuals such as Alexis St. Martin, MD; Basil Hirschowitz, MD, AGAF; Leonidas Berry, MD; Sadye Curry, MD; and, other barrier-breakers in GI who have been instrumental in shaping the modern practice of gastroenterology. I hope you will join me in attending.
In this month’s issue of GIHN, we introduce the winner of the 2023 AGA Shark Tank innovation competition, which was held during the 2023 AGA Tech Summit. We also report on a landmark phase 4, double-blind randomized trial published in the New England Journal of Medicine demonstrating the effectiveness of vedolizumab in inducing remission in chronic pouchitis, and a new AGA clinical practice update on the role of EUS-guided gallbladder drainage in acute cholecystitis.
The AGA Government Affairs Committee also updates us on their advocacy to reform prior authorization policies affecting GI practice, and explains how you can assist in these efforts. In our Member Spotlight, we introduce you to gastroenterologist Sharmila Anandasabapthy, MD, who shares her passion for global health and the one piece of career advice she’s glad she ignored.
Finally, GIHN Associate Editor Dr. Avi Ketwaroo presents our quarterly Perspectives column highlighting differing approaches to clinical management of pancreatic cystic lesions. We hope you enjoy all of the exciting content featured in this issue and look forward to seeing you in Chicago (or, virtually) for DDW.
Megan A. Adams, MD, JD, MSc
Editor-in-Chief
Understanding clinic-reported IVF success rates
The field of assisted reproductive technologies (ART) continues to evolve from its first successful birth in 1978 in England, and then in 1981 in the United States. Over the last 6 years, the total number of cycles in the U.S. has increased by 44% to nearly 370,000.
SART is an invaluable resource for both patients and physicians. Their website includes a “Predict My Success” calculator that allows patients and physicians to enter individualized data to calculate the chance of having a baby over one or more complete cycles of IVF. To help us understand the pregnancy outcome data from ART – cycles per clinic along with national results – I posed the questions below to Amy Sparks, PhD, HCLD, director of the IVF and Andrology Laboratories and the Center for Advanced Reproductive Care at University of Iowa Hospitals and Clinics, Iowa City. Dr. Sparks is past president of SART and former chairperson of the SART Registry committee when the current Clinic Summary Report format was initially released.
Question: The Fertility Clinic Success Rate and Certification Act (FCSRCA) of 1992 mandated that all ART clinics report success rate data to the federal government, through the Centers for Disease Control and Prevention, in a standardized manner. As ART is the only field in medicine to be required to annually report their patient outcomes, that is, all initiated cycles and live births, why do you believe this law was enacted and is limited to reproductive medicine?
Answer: The FCSRCA of 1992 was enacted in response to the lack of open and reliable pregnancy success rate information for patients seeking infertility care using assisted reproductive technologies. Success rates of 25%-50% were being advertised by independent clinics when, nationally, fewer than 15% of ART procedures led to live births. The Federal Trade Commission said such claims were deceptive and filed charges against five clinics, saying they misrepresented their success in helping women become pregnant. The government won one case by court order and the other four cases were settled out of court.
This field of medicine was in the spotlight as the majority of patients lacked insurance coverage for their ART cycles, and there was a strong desire to protect consumers paying out of pocket for relatively low success. Recognizing that the FTC’s mission is to ensure truth in advertising and not regulate medical care, Congress passed the FCSRCA, mandating that all centers providing ART services report all initiated cycles and their outcomes. The CDC was appointed as the agency responsible for collecting cycle data and reporting outcomes. Centers not reporting their cycles are listed as nonreporting centers.
This act also established standards for accreditation of embryology laboratories including personnel and traditional clinical laboratory management requirements. These standards serve as the foundation for embryology laboratory accrediting agencies.
Q: Why have live-birth rates on SART appeared to be focused on “per IVF cycle” as opposed to the CDC reporting of live births “per embryo transfer?”
A: An ART cycle “start” is defined as the initiation of ovarian stimulation with medication that may or may not include administration of exogenous gonadotropins, followed by oocyte retrieval and embryo transfer. Not every patient beginning a cycle will undergo an oocyte retrieval and not all patients who undergo oocyte retrieval have an embryo transfer. The live-birth rates (LBR) for each of these steps of progression in the ART process are available in the SART and CDC reports.
In 2016, SART recognized that practices were foregoing fresh embryo transfer after oocyte retrieval, opting to cryopreserve all embryos to either accommodate genetic testing of the embryos prior to transfer or to avoid embryo transfer to an unfavorable uterine environment. In response to changes in practice and in an effort to deemphasize live birth per transfer, thereby alleviating a potential motivator or pressure for practitioners to transfer multiple embryos, SART moved to a report that displays the cumulative live-birth rate per cycle start for oocyte retrieval. The cumulative live-birth rate per cycle start for oocyte retrieval is the chance of live birth from transfers of embryos derived from the oocyte retrieval and performed within 1 year of the oocyte retrieval.
This change in reporting further reduced the pressure to transfer multiple embryos and encouraged elective, single-embryo transfer. The outcome per transfer is no longer the report’s primary focus.
Q: The latest pregnancy outcomes statistics are from the year 2020 and are finalized by the CDC. Why does the SART website have this same year labeled “preliminary” outcomes?
A: Shortly after the 2016 SART report change, the CDC made similar changes to their report. The difference is that SART provides a “preliminary” report of outcomes within the year of the cycle start for oocyte retrieval. The cumulative outcome is not “finalized” until the following year as transfers may be performed as late as 12 months after the oocyte retrieval.
SART has opted to report both the “preliminary” or interim outcome and the “final” outcome a year later. The CDC has opted to limit their report to “final” outcomes. I’m happy to report that SART recently released the final report for 2021 cycles.
Q: Have national success rates in the United States continued to rise or have they plateaued?
A: It appears that success rates have plateaued; however, we find ourselves at another point where practice patterns and patients’ approach to using ART for family building have changed.
Recognizing the impact of maternal aging on reproductive potential, patients are opting to undergo multiple ART cycles to cryopreserve embryos for family building before they attempt to get pregnant. This family-building path reduces the value of measuring the LBR per cycle start as we may not know the outcome for many years. SART leaders are deliberating intently as to how to best represent this growing patient population in outcome reporting.
Q: Can you comment on the reduction of multiple gestations with the increasing use of single-embryo transfer?
A: The reduction in emphasis on live births per transfer, emphasis on singleton live-birth rates in both the SART and CDC reports, and American Society for Reproductive Medicine practice committee guidelines strongly supporting single embryo transfer have significantly reduced the rate of multiple gestations.
A decade ago, only a third of the transfers were single-embryo transfers and over 25% of live births resulted in a multiple birth. Today, the majority of embryo transfers are elective, single-embryo transfers, and the multiple birth rate has been reduced by nearly 80%. In 2020, 93% of live births from IVF were singletons.
Q: SART offers an online IVF calculator so both patients and physicians can plug in data for an approximate cumulative success rate for up to three IVF cycles. The calculator pools data from all U.S.-reporting IVF centers. Can you explain what an “IVF cycle” is and what patient information is required? Why do success rates increase over time?
A: Each “IVF cycle” is a cycle start for an oocyte retrieval and all transfers of embryos from that cycle within a year of the oocyte retrieval. If the first cycle and subsequent transfers do not lead to a live birth, patients still have a chance to achieve a live birth with a second or third cycle. The success rate increases over time as it reflects the chance of success for a population of patients, with some achieving a live birth after the first cycle and additional patients who achieve success following their third cycle.
Q: The SART IVF calculator can be used with no prior IVF cycles or following an unsuccessful cycle. Are there data to support an estimation of outcome following two or even more unsuccessful cycles?
A: The variables in the SART IVF calculator are based upon the cycle-specific data from patients seeking care at SART member clinics. The current predictor was built with data from cycles performed in 2015-2016. SART is adjusting the predictor and developing a calculator that will be routinely updated, accordingly.
Q: Only approximately 40% of states have some form of infertility coverage law in place; however the number of IVF cycles in the United States continues to increase on an annual basis. What do you think are the driving factors behind this?
A: Advocacy efforts to improve patients’ access to infertility care have included giving patients tools to encourage their employers to include infertility care in their health care benefits package. More recently, the “Great Resignation” has led to the “Great Recruitment” and employers are recognizing that the addition of infertility care to health care benefits is a powerful recruitment tool.
Dr. Trolice is director of The IVF Center in Winter Park, Fla., and professor of obstetrics and gynecology at the University of Central Florida, Orlando.
The field of assisted reproductive technologies (ART) continues to evolve from its first successful birth in 1978 in England, and then in 1981 in the United States. Over the last 6 years, the total number of cycles in the U.S. has increased by 44% to nearly 370,000.
SART is an invaluable resource for both patients and physicians. Their website includes a “Predict My Success” calculator that allows patients and physicians to enter individualized data to calculate the chance of having a baby over one or more complete cycles of IVF. To help us understand the pregnancy outcome data from ART – cycles per clinic along with national results – I posed the questions below to Amy Sparks, PhD, HCLD, director of the IVF and Andrology Laboratories and the Center for Advanced Reproductive Care at University of Iowa Hospitals and Clinics, Iowa City. Dr. Sparks is past president of SART and former chairperson of the SART Registry committee when the current Clinic Summary Report format was initially released.
Question: The Fertility Clinic Success Rate and Certification Act (FCSRCA) of 1992 mandated that all ART clinics report success rate data to the federal government, through the Centers for Disease Control and Prevention, in a standardized manner. As ART is the only field in medicine to be required to annually report their patient outcomes, that is, all initiated cycles and live births, why do you believe this law was enacted and is limited to reproductive medicine?
Answer: The FCSRCA of 1992 was enacted in response to the lack of open and reliable pregnancy success rate information for patients seeking infertility care using assisted reproductive technologies. Success rates of 25%-50% were being advertised by independent clinics when, nationally, fewer than 15% of ART procedures led to live births. The Federal Trade Commission said such claims were deceptive and filed charges against five clinics, saying they misrepresented their success in helping women become pregnant. The government won one case by court order and the other four cases were settled out of court.
This field of medicine was in the spotlight as the majority of patients lacked insurance coverage for their ART cycles, and there was a strong desire to protect consumers paying out of pocket for relatively low success. Recognizing that the FTC’s mission is to ensure truth in advertising and not regulate medical care, Congress passed the FCSRCA, mandating that all centers providing ART services report all initiated cycles and their outcomes. The CDC was appointed as the agency responsible for collecting cycle data and reporting outcomes. Centers not reporting their cycles are listed as nonreporting centers.
This act also established standards for accreditation of embryology laboratories including personnel and traditional clinical laboratory management requirements. These standards serve as the foundation for embryology laboratory accrediting agencies.
Q: Why have live-birth rates on SART appeared to be focused on “per IVF cycle” as opposed to the CDC reporting of live births “per embryo transfer?”
A: An ART cycle “start” is defined as the initiation of ovarian stimulation with medication that may or may not include administration of exogenous gonadotropins, followed by oocyte retrieval and embryo transfer. Not every patient beginning a cycle will undergo an oocyte retrieval and not all patients who undergo oocyte retrieval have an embryo transfer. The live-birth rates (LBR) for each of these steps of progression in the ART process are available in the SART and CDC reports.
In 2016, SART recognized that practices were foregoing fresh embryo transfer after oocyte retrieval, opting to cryopreserve all embryos to either accommodate genetic testing of the embryos prior to transfer or to avoid embryo transfer to an unfavorable uterine environment. In response to changes in practice and in an effort to deemphasize live birth per transfer, thereby alleviating a potential motivator or pressure for practitioners to transfer multiple embryos, SART moved to a report that displays the cumulative live-birth rate per cycle start for oocyte retrieval. The cumulative live-birth rate per cycle start for oocyte retrieval is the chance of live birth from transfers of embryos derived from the oocyte retrieval and performed within 1 year of the oocyte retrieval.
This change in reporting further reduced the pressure to transfer multiple embryos and encouraged elective, single-embryo transfer. The outcome per transfer is no longer the report’s primary focus.
Q: The latest pregnancy outcomes statistics are from the year 2020 and are finalized by the CDC. Why does the SART website have this same year labeled “preliminary” outcomes?
A: Shortly after the 2016 SART report change, the CDC made similar changes to their report. The difference is that SART provides a “preliminary” report of outcomes within the year of the cycle start for oocyte retrieval. The cumulative outcome is not “finalized” until the following year as transfers may be performed as late as 12 months after the oocyte retrieval.
SART has opted to report both the “preliminary” or interim outcome and the “final” outcome a year later. The CDC has opted to limit their report to “final” outcomes. I’m happy to report that SART recently released the final report for 2021 cycles.
Q: Have national success rates in the United States continued to rise or have they plateaued?
A: It appears that success rates have plateaued; however, we find ourselves at another point where practice patterns and patients’ approach to using ART for family building have changed.
Recognizing the impact of maternal aging on reproductive potential, patients are opting to undergo multiple ART cycles to cryopreserve embryos for family building before they attempt to get pregnant. This family-building path reduces the value of measuring the LBR per cycle start as we may not know the outcome for many years. SART leaders are deliberating intently as to how to best represent this growing patient population in outcome reporting.
Q: Can you comment on the reduction of multiple gestations with the increasing use of single-embryo transfer?
A: The reduction in emphasis on live births per transfer, emphasis on singleton live-birth rates in both the SART and CDC reports, and American Society for Reproductive Medicine practice committee guidelines strongly supporting single embryo transfer have significantly reduced the rate of multiple gestations.
A decade ago, only a third of the transfers were single-embryo transfers and over 25% of live births resulted in a multiple birth. Today, the majority of embryo transfers are elective, single-embryo transfers, and the multiple birth rate has been reduced by nearly 80%. In 2020, 93% of live births from IVF were singletons.
Q: SART offers an online IVF calculator so both patients and physicians can plug in data for an approximate cumulative success rate for up to three IVF cycles. The calculator pools data from all U.S.-reporting IVF centers. Can you explain what an “IVF cycle” is and what patient information is required? Why do success rates increase over time?
A: Each “IVF cycle” is a cycle start for an oocyte retrieval and all transfers of embryos from that cycle within a year of the oocyte retrieval. If the first cycle and subsequent transfers do not lead to a live birth, patients still have a chance to achieve a live birth with a second or third cycle. The success rate increases over time as it reflects the chance of success for a population of patients, with some achieving a live birth after the first cycle and additional patients who achieve success following their third cycle.
Q: The SART IVF calculator can be used with no prior IVF cycles or following an unsuccessful cycle. Are there data to support an estimation of outcome following two or even more unsuccessful cycles?
A: The variables in the SART IVF calculator are based upon the cycle-specific data from patients seeking care at SART member clinics. The current predictor was built with data from cycles performed in 2015-2016. SART is adjusting the predictor and developing a calculator that will be routinely updated, accordingly.
Q: Only approximately 40% of states have some form of infertility coverage law in place; however the number of IVF cycles in the United States continues to increase on an annual basis. What do you think are the driving factors behind this?
A: Advocacy efforts to improve patients’ access to infertility care have included giving patients tools to encourage their employers to include infertility care in their health care benefits package. More recently, the “Great Resignation” has led to the “Great Recruitment” and employers are recognizing that the addition of infertility care to health care benefits is a powerful recruitment tool.
Dr. Trolice is director of The IVF Center in Winter Park, Fla., and professor of obstetrics and gynecology at the University of Central Florida, Orlando.
The field of assisted reproductive technologies (ART) continues to evolve from its first successful birth in 1978 in England, and then in 1981 in the United States. Over the last 6 years, the total number of cycles in the U.S. has increased by 44% to nearly 370,000.
SART is an invaluable resource for both patients and physicians. Their website includes a “Predict My Success” calculator that allows patients and physicians to enter individualized data to calculate the chance of having a baby over one or more complete cycles of IVF. To help us understand the pregnancy outcome data from ART – cycles per clinic along with national results – I posed the questions below to Amy Sparks, PhD, HCLD, director of the IVF and Andrology Laboratories and the Center for Advanced Reproductive Care at University of Iowa Hospitals and Clinics, Iowa City. Dr. Sparks is past president of SART and former chairperson of the SART Registry committee when the current Clinic Summary Report format was initially released.
Question: The Fertility Clinic Success Rate and Certification Act (FCSRCA) of 1992 mandated that all ART clinics report success rate data to the federal government, through the Centers for Disease Control and Prevention, in a standardized manner. As ART is the only field in medicine to be required to annually report their patient outcomes, that is, all initiated cycles and live births, why do you believe this law was enacted and is limited to reproductive medicine?
Answer: The FCSRCA of 1992 was enacted in response to the lack of open and reliable pregnancy success rate information for patients seeking infertility care using assisted reproductive technologies. Success rates of 25%-50% were being advertised by independent clinics when, nationally, fewer than 15% of ART procedures led to live births. The Federal Trade Commission said such claims were deceptive and filed charges against five clinics, saying they misrepresented their success in helping women become pregnant. The government won one case by court order and the other four cases were settled out of court.
This field of medicine was in the spotlight as the majority of patients lacked insurance coverage for their ART cycles, and there was a strong desire to protect consumers paying out of pocket for relatively low success. Recognizing that the FTC’s mission is to ensure truth in advertising and not regulate medical care, Congress passed the FCSRCA, mandating that all centers providing ART services report all initiated cycles and their outcomes. The CDC was appointed as the agency responsible for collecting cycle data and reporting outcomes. Centers not reporting their cycles are listed as nonreporting centers.
This act also established standards for accreditation of embryology laboratories including personnel and traditional clinical laboratory management requirements. These standards serve as the foundation for embryology laboratory accrediting agencies.
Q: Why have live-birth rates on SART appeared to be focused on “per IVF cycle” as opposed to the CDC reporting of live births “per embryo transfer?”
A: An ART cycle “start” is defined as the initiation of ovarian stimulation with medication that may or may not include administration of exogenous gonadotropins, followed by oocyte retrieval and embryo transfer. Not every patient beginning a cycle will undergo an oocyte retrieval and not all patients who undergo oocyte retrieval have an embryo transfer. The live-birth rates (LBR) for each of these steps of progression in the ART process are available in the SART and CDC reports.
In 2016, SART recognized that practices were foregoing fresh embryo transfer after oocyte retrieval, opting to cryopreserve all embryos to either accommodate genetic testing of the embryos prior to transfer or to avoid embryo transfer to an unfavorable uterine environment. In response to changes in practice and in an effort to deemphasize live birth per transfer, thereby alleviating a potential motivator or pressure for practitioners to transfer multiple embryos, SART moved to a report that displays the cumulative live-birth rate per cycle start for oocyte retrieval. The cumulative live-birth rate per cycle start for oocyte retrieval is the chance of live birth from transfers of embryos derived from the oocyte retrieval and performed within 1 year of the oocyte retrieval.
This change in reporting further reduced the pressure to transfer multiple embryos and encouraged elective, single-embryo transfer. The outcome per transfer is no longer the report’s primary focus.
Q: The latest pregnancy outcomes statistics are from the year 2020 and are finalized by the CDC. Why does the SART website have this same year labeled “preliminary” outcomes?
A: Shortly after the 2016 SART report change, the CDC made similar changes to their report. The difference is that SART provides a “preliminary” report of outcomes within the year of the cycle start for oocyte retrieval. The cumulative outcome is not “finalized” until the following year as transfers may be performed as late as 12 months after the oocyte retrieval.
SART has opted to report both the “preliminary” or interim outcome and the “final” outcome a year later. The CDC has opted to limit their report to “final” outcomes. I’m happy to report that SART recently released the final report for 2021 cycles.
Q: Have national success rates in the United States continued to rise or have they plateaued?
A: It appears that success rates have plateaued; however, we find ourselves at another point where practice patterns and patients’ approach to using ART for family building have changed.
Recognizing the impact of maternal aging on reproductive potential, patients are opting to undergo multiple ART cycles to cryopreserve embryos for family building before they attempt to get pregnant. This family-building path reduces the value of measuring the LBR per cycle start as we may not know the outcome for many years. SART leaders are deliberating intently as to how to best represent this growing patient population in outcome reporting.
Q: Can you comment on the reduction of multiple gestations with the increasing use of single-embryo transfer?
A: The reduction in emphasis on live births per transfer, emphasis on singleton live-birth rates in both the SART and CDC reports, and American Society for Reproductive Medicine practice committee guidelines strongly supporting single embryo transfer have significantly reduced the rate of multiple gestations.
A decade ago, only a third of the transfers were single-embryo transfers and over 25% of live births resulted in a multiple birth. Today, the majority of embryo transfers are elective, single-embryo transfers, and the multiple birth rate has been reduced by nearly 80%. In 2020, 93% of live births from IVF were singletons.
Q: SART offers an online IVF calculator so both patients and physicians can plug in data for an approximate cumulative success rate for up to three IVF cycles. The calculator pools data from all U.S.-reporting IVF centers. Can you explain what an “IVF cycle” is and what patient information is required? Why do success rates increase over time?
A: Each “IVF cycle” is a cycle start for an oocyte retrieval and all transfers of embryos from that cycle within a year of the oocyte retrieval. If the first cycle and subsequent transfers do not lead to a live birth, patients still have a chance to achieve a live birth with a second or third cycle. The success rate increases over time as it reflects the chance of success for a population of patients, with some achieving a live birth after the first cycle and additional patients who achieve success following their third cycle.
Q: The SART IVF calculator can be used with no prior IVF cycles or following an unsuccessful cycle. Are there data to support an estimation of outcome following two or even more unsuccessful cycles?
A: The variables in the SART IVF calculator are based upon the cycle-specific data from patients seeking care at SART member clinics. The current predictor was built with data from cycles performed in 2015-2016. SART is adjusting the predictor and developing a calculator that will be routinely updated, accordingly.
Q: Only approximately 40% of states have some form of infertility coverage law in place; however the number of IVF cycles in the United States continues to increase on an annual basis. What do you think are the driving factors behind this?
A: Advocacy efforts to improve patients’ access to infertility care have included giving patients tools to encourage their employers to include infertility care in their health care benefits package. More recently, the “Great Resignation” has led to the “Great Recruitment” and employers are recognizing that the addition of infertility care to health care benefits is a powerful recruitment tool.
Dr. Trolice is director of The IVF Center in Winter Park, Fla., and professor of obstetrics and gynecology at the University of Central Florida, Orlando.
Osteoporosis and osteopenia: Latest treatment recommendations
This transcript has been edited for clarity.
I’m Dr. Neil Skolnik. Today’s topic is the new osteoporosis treatment guidelines issued by the American College of Physicians (ACP). The focus of the guidelines is treatment of osteoporosis. But first, I want to discuss screening.
In its 2018 statement, the U.S. Preventive Services Task Force (USPSTF) says that osteoporosis should be screened for in women older than 65 years of age, and those who are younger who are at increased risk based on a risk assessment tool (usually the FRAX tool). There is not enough evidence to weigh in for or against screening men. The other large organization that weighs in on screening is the Bone Health & Osteoporosis Foundation, which agrees with the USPSTF, but in addition says that we should be screening men over age 70 and men who are younger (age 50 to 69) who have risk factors. We should also screen anyone who has a fracture after low impact or no trauma.
Let’s now go on to the ACP treatment guidelines. Osteoporosis is defined as bone mineral density at the femoral neck or the lumbar spine, or both, with a T score less than -2.5.
For postmenopausal women with osteoporosis, you should use a bisphosphonate as first-line treatment to reduce the risk for future fractures. This is given a strong recommendation based on a high certainty of evidence. Bisphosphonates vs. placebo over 3 years leads to one fewer hip fracture per 150 patients treated and one fewer vertebral fracture per 50 people treated.
All the other recommendations in the guidelines are considered “conditional recommendations” that are correct for most people. But whether they make sense for an individual patient depends upon other details, as well as their values and preferences. For instance, treatment of osteoporosis in men is given a conditional recommendation, not because the evidence suggests that it’s not as effective, but because there is not as much evidence. Initial treatment for a man with osteoporosis is with bisphosphonates. Men do get osteoporosis and account for about 30% of hip fractures. This is not a surprise to anyone who takes care of older adults.
For postmenopausal women or men who you would want to treat but who can’t tolerate a bisphosphonate, then the recommendation is to use a RANK ligand inhibitor. Denosumab can be used as second-line treatment to reduce the risk for fractures. Remember, bisphosphonates and denosumab are antiresorptive drugs, meaning they slow the progression of osteoporosis. The anabolic drugs, on the other hand, such as the sclerostin inhibitor romosozumab and recombinant human parathyroid hormone (PTH) teriparatide, increase bone density. The anabolic agents should be used only in women with primary osteoporosis who are at very high risk for fractures, and use of these agents always needs to be followed by an antiresorptive agent, because otherwise there’s a risk for rebound osteoporosis and an increased risk for vertebral fractures.
Now, how about osteopenia? The guidelines recommend that for women over 65 with osteopenia, use an individualized approach influenced by the level of risk for fracture, including increased age, low body weight, current smoking, hip fracture in a parent, fall risk, and a personal history of fracture. The guidelines note that increasing the duration of bisphosphonate therapy beyond 3-5 years does reduce the risk for new vertebral fractures, but it doesn’t reduce the risk for other fractures and it increases the risk for osteonecrosis of the jaw and atypical hip fractures. Therefore, the guidelines say that we should use bisphosphonates only for 3-5 years unless someone is at extremely high risk. It’s also important to note that there’s a fivefold higher risk for atypical femoral fractures among Asian women.
Don’t forget about adequate vitamin D and calcium. And most importantly, don’t forget about exercise, particularly exercise aimed at improving balance and quadriceps strength, which helps prevent falls.
Dr. Skolnik is professor, department of family medicine, Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, and associate director, department of family medicine, Abington (Pa.) Jefferson Health. He disclosed ties with AstraZeneca, Bayer, Boehringer Ingelheim, Eli Lilly, GlaxoSmithKline, Merck, Sanofi, Sanofi Pasteur, and Teva.
A version of this article originally appeared on Medscape.com.
This transcript has been edited for clarity.
I’m Dr. Neil Skolnik. Today’s topic is the new osteoporosis treatment guidelines issued by the American College of Physicians (ACP). The focus of the guidelines is treatment of osteoporosis. But first, I want to discuss screening.
In its 2018 statement, the U.S. Preventive Services Task Force (USPSTF) says that osteoporosis should be screened for in women older than 65 years of age, and those who are younger who are at increased risk based on a risk assessment tool (usually the FRAX tool). There is not enough evidence to weigh in for or against screening men. The other large organization that weighs in on screening is the Bone Health & Osteoporosis Foundation, which agrees with the USPSTF, but in addition says that we should be screening men over age 70 and men who are younger (age 50 to 69) who have risk factors. We should also screen anyone who has a fracture after low impact or no trauma.
Let’s now go on to the ACP treatment guidelines. Osteoporosis is defined as bone mineral density at the femoral neck or the lumbar spine, or both, with a T score less than -2.5.
For postmenopausal women with osteoporosis, you should use a bisphosphonate as first-line treatment to reduce the risk for future fractures. This is given a strong recommendation based on a high certainty of evidence. Bisphosphonates vs. placebo over 3 years leads to one fewer hip fracture per 150 patients treated and one fewer vertebral fracture per 50 people treated.
All the other recommendations in the guidelines are considered “conditional recommendations” that are correct for most people. But whether they make sense for an individual patient depends upon other details, as well as their values and preferences. For instance, treatment of osteoporosis in men is given a conditional recommendation, not because the evidence suggests that it’s not as effective, but because there is not as much evidence. Initial treatment for a man with osteoporosis is with bisphosphonates. Men do get osteoporosis and account for about 30% of hip fractures. This is not a surprise to anyone who takes care of older adults.
For postmenopausal women or men who you would want to treat but who can’t tolerate a bisphosphonate, then the recommendation is to use a RANK ligand inhibitor. Denosumab can be used as second-line treatment to reduce the risk for fractures. Remember, bisphosphonates and denosumab are antiresorptive drugs, meaning they slow the progression of osteoporosis. The anabolic drugs, on the other hand, such as the sclerostin inhibitor romosozumab and recombinant human parathyroid hormone (PTH) teriparatide, increase bone density. The anabolic agents should be used only in women with primary osteoporosis who are at very high risk for fractures, and use of these agents always needs to be followed by an antiresorptive agent, because otherwise there’s a risk for rebound osteoporosis and an increased risk for vertebral fractures.
Now, how about osteopenia? The guidelines recommend that for women over 65 with osteopenia, use an individualized approach influenced by the level of risk for fracture, including increased age, low body weight, current smoking, hip fracture in a parent, fall risk, and a personal history of fracture. The guidelines note that increasing the duration of bisphosphonate therapy beyond 3-5 years does reduce the risk for new vertebral fractures, but it doesn’t reduce the risk for other fractures and it increases the risk for osteonecrosis of the jaw and atypical hip fractures. Therefore, the guidelines say that we should use bisphosphonates only for 3-5 years unless someone is at extremely high risk. It’s also important to note that there’s a fivefold higher risk for atypical femoral fractures among Asian women.
Don’t forget about adequate vitamin D and calcium. And most importantly, don’t forget about exercise, particularly exercise aimed at improving balance and quadriceps strength, which helps prevent falls.
Dr. Skolnik is professor, department of family medicine, Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, and associate director, department of family medicine, Abington (Pa.) Jefferson Health. He disclosed ties with AstraZeneca, Bayer, Boehringer Ingelheim, Eli Lilly, GlaxoSmithKline, Merck, Sanofi, Sanofi Pasteur, and Teva.
A version of this article originally appeared on Medscape.com.
This transcript has been edited for clarity.
I’m Dr. Neil Skolnik. Today’s topic is the new osteoporosis treatment guidelines issued by the American College of Physicians (ACP). The focus of the guidelines is treatment of osteoporosis. But first, I want to discuss screening.
In its 2018 statement, the U.S. Preventive Services Task Force (USPSTF) says that osteoporosis should be screened for in women older than 65 years of age, and those who are younger who are at increased risk based on a risk assessment tool (usually the FRAX tool). There is not enough evidence to weigh in for or against screening men. The other large organization that weighs in on screening is the Bone Health & Osteoporosis Foundation, which agrees with the USPSTF, but in addition says that we should be screening men over age 70 and men who are younger (age 50 to 69) who have risk factors. We should also screen anyone who has a fracture after low impact or no trauma.
Let’s now go on to the ACP treatment guidelines. Osteoporosis is defined as bone mineral density at the femoral neck or the lumbar spine, or both, with a T score less than -2.5.
For postmenopausal women with osteoporosis, you should use a bisphosphonate as first-line treatment to reduce the risk for future fractures. This is given a strong recommendation based on a high certainty of evidence. Bisphosphonates vs. placebo over 3 years leads to one fewer hip fracture per 150 patients treated and one fewer vertebral fracture per 50 people treated.
All the other recommendations in the guidelines are considered “conditional recommendations” that are correct for most people. But whether they make sense for an individual patient depends upon other details, as well as their values and preferences. For instance, treatment of osteoporosis in men is given a conditional recommendation, not because the evidence suggests that it’s not as effective, but because there is not as much evidence. Initial treatment for a man with osteoporosis is with bisphosphonates. Men do get osteoporosis and account for about 30% of hip fractures. This is not a surprise to anyone who takes care of older adults.
For postmenopausal women or men who you would want to treat but who can’t tolerate a bisphosphonate, then the recommendation is to use a RANK ligand inhibitor. Denosumab can be used as second-line treatment to reduce the risk for fractures. Remember, bisphosphonates and denosumab are antiresorptive drugs, meaning they slow the progression of osteoporosis. The anabolic drugs, on the other hand, such as the sclerostin inhibitor romosozumab and recombinant human parathyroid hormone (PTH) teriparatide, increase bone density. The anabolic agents should be used only in women with primary osteoporosis who are at very high risk for fractures, and use of these agents always needs to be followed by an antiresorptive agent, because otherwise there’s a risk for rebound osteoporosis and an increased risk for vertebral fractures.
Now, how about osteopenia? The guidelines recommend that for women over 65 with osteopenia, use an individualized approach influenced by the level of risk for fracture, including increased age, low body weight, current smoking, hip fracture in a parent, fall risk, and a personal history of fracture. The guidelines note that increasing the duration of bisphosphonate therapy beyond 3-5 years does reduce the risk for new vertebral fractures, but it doesn’t reduce the risk for other fractures and it increases the risk for osteonecrosis of the jaw and atypical hip fractures. Therefore, the guidelines say that we should use bisphosphonates only for 3-5 years unless someone is at extremely high risk. It’s also important to note that there’s a fivefold higher risk for atypical femoral fractures among Asian women.
Don’t forget about adequate vitamin D and calcium. And most importantly, don’t forget about exercise, particularly exercise aimed at improving balance and quadriceps strength, which helps prevent falls.
Dr. Skolnik is professor, department of family medicine, Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, and associate director, department of family medicine, Abington (Pa.) Jefferson Health. He disclosed ties with AstraZeneca, Bayer, Boehringer Ingelheim, Eli Lilly, GlaxoSmithKline, Merck, Sanofi, Sanofi Pasteur, and Teva.
A version of this article originally appeared on Medscape.com.
Drive, chip, and putt your way to osteoarthritis relief
Taking a swing against arthritis
Osteoarthritis is a tough disease to manage. Exercise helps ease the stiffness and pain of the joints, but at the same time, the disease makes it difficult to do that beneficial exercise. Even a relatively simple activity like jogging can hurt more than it helps. If only there were a low-impact exercise that was incredibly popular among the generally older population who are likely to have arthritis.
We love a good golf study here at LOTME, and a group of Australian and U.K. researchers have provided. Osteoarthritis affects 2 million people in the land down under, making it the most common source of disability there. In that population, only 64% reported their physical health to be good, very good, or excellent. Among the 459 golfers with OA that the study authors surveyed, however, the percentage reporting good health rose to more than 90%.
A similar story emerged when they looked at mental health. Nearly a quarter of nongolfers with OA reported high or very high levels of psychological distress, compared with just 8% of golfers. This pattern of improved physical and mental health remained when the researchers looked at the general, non-OA population.
This isn’t the first time golf’s been connected with improved health, and previous studies have shown golf to reduce the risks of cardiovascular disease, diabetes, and obesity, among other things. Just walking one 18-hole round significantly exceeds the CDC’s recommended 150 minutes of physical activity per week. Go out multiple times a week – leaving the cart and beer at home, American golfers – and you’ll be fit for a lifetime.
The golfers on our staff, however, are still waiting for those mental health benefits to kick in. Because when we’re adding up our scorecard after that string of four double bogeys to end the round, we’re most definitely thinking: “Yes, this sport is reducing my psychological distress. I am having fun right now.”
Battle of the sexes’ intestines
There are, we’re sure you’ve noticed, some differences between males and females. Females, for one thing, have longer small intestines than males. Everybody knows that, right? You didn’t know? Really? … Really?
Well, then, we’re guessing you haven’t read “Hidden diversity: Comparative functional morphology of humans and other species” by Erin A. McKenney, PhD, of North Carolina State University, Raleigh, and associates, which just appeared in PeerJ. We couldn’t put it down, even in the shower – a real page-turner/scroller. (It’s a great way to clean a phone, for those who also like to scroll, text, or talk on the toilet.)
The researchers got out their rulers, calipers, and string and took many measurements of the digestive systems of 45 human cadavers (21 female and 24 male), which were compared with data from 10 rats, 10 pigs, and 10 bullfrogs, which had been collected (the measurements, not the animals) by undergraduate students enrolled in a comparative anatomy laboratory course at the university.
There was little intestinal-length variation among the four-legged subjects, but when it comes to humans, females have “consistently and significantly longer small intestines than males,” the investigators noted.
The women’s small intestines, almost 14 feet long on average, were about a foot longer than the men’s, which suggests that women are better able to extract nutrients from food and “supports the canalization hypothesis, which posits that women are better able to survive during periods of stress,” coauthor Amanda Hale said in a written statement from the school. The way to a man’s heart may be through his stomach, but the way to a woman’s heart is through her duodenum, it seems.
Fascinating stuff, to be sure, but the thing that really caught our eye in the PeerJ article was the authors’ suggestion “that organs behave independently of one another, both within and across species.” Organs behaving independently? A somewhat ominous concept, no doubt, but it does explain a lot of the sounds we hear coming from our guts, which can get pretty frightening, especially on chili night.
Dog walking is dangerous business
Yes, you did read that right. A lot of strange things can send you to the emergency department. Go ahead and add dog walking onto that list.
Investigators from Johns Hopkins University estimate that over 422,000 adults presented to U.S. emergency departments with leash-dependent dog walking-related injuries between 2001 and 2020.
With almost 53% of U.S. households owning at least one dog in 2021-2022 in the wake of the COVID pet boom, this kind of occurrence is becoming more common than you think. The annual number of dog-walking injuries more than quadrupled from 7,300 to 32,000 over the course of the study, and the researchers link that spike to the promotion of dog walking for fitness, along with the boost of ownership itself.
The most common injuries listed in the National Electronic Injury Surveillance System database were finger fracture, traumatic brain injury, and shoulder sprain or strain. These mostly involved falls from being pulled, tripped, or tangled up in the leash while walking. For those aged 65 years and older, traumatic brain injury and hip fracture were the most common.
Women were 50% more likely to sustain a fracture than were men, and dog owners aged 65 and older were three times as likely to fall, twice as likely to get a fracture, and 60% more likely to have brain injury than were younger people. Now, that’s not to say younger people don’t also get hurt. After all, dogs aren’t ageists. The researchers have that data but it’s coming out later.
Meanwhile, the pitfalls involved with just trying to get our daily steps in while letting Muffin do her business have us on the lookout for random squirrels.
Taking a swing against arthritis
Osteoarthritis is a tough disease to manage. Exercise helps ease the stiffness and pain of the joints, but at the same time, the disease makes it difficult to do that beneficial exercise. Even a relatively simple activity like jogging can hurt more than it helps. If only there were a low-impact exercise that was incredibly popular among the generally older population who are likely to have arthritis.
We love a good golf study here at LOTME, and a group of Australian and U.K. researchers have provided. Osteoarthritis affects 2 million people in the land down under, making it the most common source of disability there. In that population, only 64% reported their physical health to be good, very good, or excellent. Among the 459 golfers with OA that the study authors surveyed, however, the percentage reporting good health rose to more than 90%.
A similar story emerged when they looked at mental health. Nearly a quarter of nongolfers with OA reported high or very high levels of psychological distress, compared with just 8% of golfers. This pattern of improved physical and mental health remained when the researchers looked at the general, non-OA population.
This isn’t the first time golf’s been connected with improved health, and previous studies have shown golf to reduce the risks of cardiovascular disease, diabetes, and obesity, among other things. Just walking one 18-hole round significantly exceeds the CDC’s recommended 150 minutes of physical activity per week. Go out multiple times a week – leaving the cart and beer at home, American golfers – and you’ll be fit for a lifetime.
The golfers on our staff, however, are still waiting for those mental health benefits to kick in. Because when we’re adding up our scorecard after that string of four double bogeys to end the round, we’re most definitely thinking: “Yes, this sport is reducing my psychological distress. I am having fun right now.”
Battle of the sexes’ intestines
There are, we’re sure you’ve noticed, some differences between males and females. Females, for one thing, have longer small intestines than males. Everybody knows that, right? You didn’t know? Really? … Really?
Well, then, we’re guessing you haven’t read “Hidden diversity: Comparative functional morphology of humans and other species” by Erin A. McKenney, PhD, of North Carolina State University, Raleigh, and associates, which just appeared in PeerJ. We couldn’t put it down, even in the shower – a real page-turner/scroller. (It’s a great way to clean a phone, for those who also like to scroll, text, or talk on the toilet.)
The researchers got out their rulers, calipers, and string and took many measurements of the digestive systems of 45 human cadavers (21 female and 24 male), which were compared with data from 10 rats, 10 pigs, and 10 bullfrogs, which had been collected (the measurements, not the animals) by undergraduate students enrolled in a comparative anatomy laboratory course at the university.
There was little intestinal-length variation among the four-legged subjects, but when it comes to humans, females have “consistently and significantly longer small intestines than males,” the investigators noted.
The women’s small intestines, almost 14 feet long on average, were about a foot longer than the men’s, which suggests that women are better able to extract nutrients from food and “supports the canalization hypothesis, which posits that women are better able to survive during periods of stress,” coauthor Amanda Hale said in a written statement from the school. The way to a man’s heart may be through his stomach, but the way to a woman’s heart is through her duodenum, it seems.
Fascinating stuff, to be sure, but the thing that really caught our eye in the PeerJ article was the authors’ suggestion “that organs behave independently of one another, both within and across species.” Organs behaving independently? A somewhat ominous concept, no doubt, but it does explain a lot of the sounds we hear coming from our guts, which can get pretty frightening, especially on chili night.
Dog walking is dangerous business
Yes, you did read that right. A lot of strange things can send you to the emergency department. Go ahead and add dog walking onto that list.
Investigators from Johns Hopkins University estimate that over 422,000 adults presented to U.S. emergency departments with leash-dependent dog walking-related injuries between 2001 and 2020.
With almost 53% of U.S. households owning at least one dog in 2021-2022 in the wake of the COVID pet boom, this kind of occurrence is becoming more common than you think. The annual number of dog-walking injuries more than quadrupled from 7,300 to 32,000 over the course of the study, and the researchers link that spike to the promotion of dog walking for fitness, along with the boost of ownership itself.
The most common injuries listed in the National Electronic Injury Surveillance System database were finger fracture, traumatic brain injury, and shoulder sprain or strain. These mostly involved falls from being pulled, tripped, or tangled up in the leash while walking. For those aged 65 years and older, traumatic brain injury and hip fracture were the most common.
Women were 50% more likely to sustain a fracture than were men, and dog owners aged 65 and older were three times as likely to fall, twice as likely to get a fracture, and 60% more likely to have brain injury than were younger people. Now, that’s not to say younger people don’t also get hurt. After all, dogs aren’t ageists. The researchers have that data but it’s coming out later.
Meanwhile, the pitfalls involved with just trying to get our daily steps in while letting Muffin do her business have us on the lookout for random squirrels.
Taking a swing against arthritis
Osteoarthritis is a tough disease to manage. Exercise helps ease the stiffness and pain of the joints, but at the same time, the disease makes it difficult to do that beneficial exercise. Even a relatively simple activity like jogging can hurt more than it helps. If only there were a low-impact exercise that was incredibly popular among the generally older population who are likely to have arthritis.
We love a good golf study here at LOTME, and a group of Australian and U.K. researchers have provided. Osteoarthritis affects 2 million people in the land down under, making it the most common source of disability there. In that population, only 64% reported their physical health to be good, very good, or excellent. Among the 459 golfers with OA that the study authors surveyed, however, the percentage reporting good health rose to more than 90%.
A similar story emerged when they looked at mental health. Nearly a quarter of nongolfers with OA reported high or very high levels of psychological distress, compared with just 8% of golfers. This pattern of improved physical and mental health remained when the researchers looked at the general, non-OA population.
This isn’t the first time golf’s been connected with improved health, and previous studies have shown golf to reduce the risks of cardiovascular disease, diabetes, and obesity, among other things. Just walking one 18-hole round significantly exceeds the CDC’s recommended 150 minutes of physical activity per week. Go out multiple times a week – leaving the cart and beer at home, American golfers – and you’ll be fit for a lifetime.
The golfers on our staff, however, are still waiting for those mental health benefits to kick in. Because when we’re adding up our scorecard after that string of four double bogeys to end the round, we’re most definitely thinking: “Yes, this sport is reducing my psychological distress. I am having fun right now.”
Battle of the sexes’ intestines
There are, we’re sure you’ve noticed, some differences between males and females. Females, for one thing, have longer small intestines than males. Everybody knows that, right? You didn’t know? Really? … Really?
Well, then, we’re guessing you haven’t read “Hidden diversity: Comparative functional morphology of humans and other species” by Erin A. McKenney, PhD, of North Carolina State University, Raleigh, and associates, which just appeared in PeerJ. We couldn’t put it down, even in the shower – a real page-turner/scroller. (It’s a great way to clean a phone, for those who also like to scroll, text, or talk on the toilet.)
The researchers got out their rulers, calipers, and string and took many measurements of the digestive systems of 45 human cadavers (21 female and 24 male), which were compared with data from 10 rats, 10 pigs, and 10 bullfrogs, which had been collected (the measurements, not the animals) by undergraduate students enrolled in a comparative anatomy laboratory course at the university.
There was little intestinal-length variation among the four-legged subjects, but when it comes to humans, females have “consistently and significantly longer small intestines than males,” the investigators noted.
The women’s small intestines, almost 14 feet long on average, were about a foot longer than the men’s, which suggests that women are better able to extract nutrients from food and “supports the canalization hypothesis, which posits that women are better able to survive during periods of stress,” coauthor Amanda Hale said in a written statement from the school. The way to a man’s heart may be through his stomach, but the way to a woman’s heart is through her duodenum, it seems.
Fascinating stuff, to be sure, but the thing that really caught our eye in the PeerJ article was the authors’ suggestion “that organs behave independently of one another, both within and across species.” Organs behaving independently? A somewhat ominous concept, no doubt, but it does explain a lot of the sounds we hear coming from our guts, which can get pretty frightening, especially on chili night.
Dog walking is dangerous business
Yes, you did read that right. A lot of strange things can send you to the emergency department. Go ahead and add dog walking onto that list.
Investigators from Johns Hopkins University estimate that over 422,000 adults presented to U.S. emergency departments with leash-dependent dog walking-related injuries between 2001 and 2020.
With almost 53% of U.S. households owning at least one dog in 2021-2022 in the wake of the COVID pet boom, this kind of occurrence is becoming more common than you think. The annual number of dog-walking injuries more than quadrupled from 7,300 to 32,000 over the course of the study, and the researchers link that spike to the promotion of dog walking for fitness, along with the boost of ownership itself.
The most common injuries listed in the National Electronic Injury Surveillance System database were finger fracture, traumatic brain injury, and shoulder sprain or strain. These mostly involved falls from being pulled, tripped, or tangled up in the leash while walking. For those aged 65 years and older, traumatic brain injury and hip fracture were the most common.
Women were 50% more likely to sustain a fracture than were men, and dog owners aged 65 and older were three times as likely to fall, twice as likely to get a fracture, and 60% more likely to have brain injury than were younger people. Now, that’s not to say younger people don’t also get hurt. After all, dogs aren’t ageists. The researchers have that data but it’s coming out later.
Meanwhile, the pitfalls involved with just trying to get our daily steps in while letting Muffin do her business have us on the lookout for random squirrels.
The newest form of mommy shaming: The 'narcissistic mother'
Narcissists appear to be everywhere. A few minutes on the Internet shows the dangers of narcissistic romantic partners, friends, and employers. Identifying and limiting the reach of their manipulative and self-centered endeavors is cast as both urgent and necessary. The destructive powers of the narcissistic mother are viewed as especially in need of remedy, and any bookstore can reveal the risks they pose: “Will I Ever Be Good Enough? Healing the Daughters of Narcissistic Mothers;” “You’re Not Crazy – It’s Your Mother: Freedom for Daughters of Narcissistic Mothers;” “Healing for Daughters of Narcissistic Mothers: A Practical Guide on How to Recover from the Childhood Trauma of Toxic Relationship with Your Mother and How You Can Handle Her Abuse Now As An Adult” – to name just a few (there are more).
As a psychologist specializing in parental estrangement, I (Dr. Coleman) regularly see letters from adult children explaining their discovery-through-therapy that their mother is a narcissist. The proclamation often comes when the therapist has never met the mother. Typically, the discovery is presented as a justification for ending the relationship with the parent. While these mothers could rightly be accused of being anxious, over-involved, depressed, or hurt by the lack of gratitude or reciprocity, the vast majority are not narcissists.
Which begs the question, why are so many being labeled in this way? Are therapists only now discovering the power of narcissistic mothers? Have they always existed, casting their spells upon unwary children? Are those now-grown children only today able to disentangle themselves from the longstanding, pervasive, and harmful influence of these parents, with the help of therapy? Or is this the newest form of mommy shaming as it engages head-on with our Diagnostic and Statistical Manuals?
We believe it is the latter.
Blaming mothers has a long reach. Mothers have been blamed for causing schizophrenia, autism, homosexuality, and effeminacy in men. While we used to call people selfish and “controlling,” narcissism is a more consequential label as it confers diagnostic validity from the mental health profession. Worse, it suggests an individual beyond reach, where the only answer is distance, containment, or estrangement.
The rise of the narcissistic mother comes during a time when, for the past 4 decades, the average working mother spends more time with her children than stay-at-home moms did in the supposed halcyon days of the 1960s’ middle class, before “parenting” was a common term. A variety of economists and sociologists observed that an increase in parental effort became necessary to launch children into adulthood given the retreat of governmental and corporate support for parents that began in the 1980s.
“The financial and emotional burden on families has grown in ways that were almost unimaginable just a half-century ago,” writes the University of Pennsylvania sociologist Frank Furstenberg in “On a New Schedule: Transitions to Adulthood and Family Change.” In addition, a view of children as vulnerable and in need of intense parental investment gained momentum over the course of the 20th century and has continued unabated into the present. As a result, an environment of intense maternal preoccupation, worry, guilt, and involvement with children’s grades, safety, health, and emotional states – referred to as “helicopter” and “tiger” mothering – grew into the norm across the classes.
While prior generations of parents could, by today’s standards, be viewed as being insufficiently involved, today’s parents have become “over-involved” – aided by the ability of parents to be in constant contact with their adult children through technology. While this shift to a more hands-on, more conscientious parenting has been a boon to parent–adult child relationships in the main, the downside has meant, for some, too much of a good thing. From that perspective, pathologizing a mother’s involvement or her expressions of hurt for that child’s lack of availability provides a shield against the child’s feelings of guilt or obligation.
Diagnoses can serve a social purpose: They can allow individuals to use the authority of our profession to decide who to be close to and who to let go. They can provide insulation against feelings of obligation or guilt. They create a way to label behavior as dysfunctional that in other eras or cultures would be considered normal, even valued. To that extent, diagnoses don’t occur in a cultural void. They are inextricably tied to larger ideals, be they individualistic – as exists in the United States – or collectivist, as exists in many other parts of the world.
While we have decided what parents owe our children, it is unclear what parents might ask in return. To that end, mothers who want more interest, availability, or gratitude today are vulnerable to being cast as selfish, uncaring, needy, and controlling. They can now be viewed as failing in their task of selfless devotion. Their desires for closeness or repair can be regarded as incompatible with the quest for the adult child’s self-fulfillment and identity; her identification with her children too great a barrier to their individuation.
There may well be good reasons to estrange family members for their intolerable behaviors, especially ones who have threatened personal safety. Yet, while there are plenty of problematic parents, few meet the diagnostic criteria of narcissistic personality disorder. More important, such labels can discourage a discussion of boundaries that both the parents and the adult children might find acceptable – which sometimes means asking family members to tolerate behavior or individuals not to their liking.
Diagnoses carry enormous social weight and can facilitate estrangements or negativity to mothers that are far more workable than our patients’ characterization of them might lead them or us to believe. ; it devalues their years of love and dedication, however flawed; and it weakens the fabric of connection that could otherwise exist. Rather than provide a path toward compassion or understanding, “narcissistic mother” just becomes the latest form of mommy shaming.
Dr. Coleman is a clinical psychologist and author of “Rules of Estrangement: Why Adult Children Cut Ties and How to Heal the Conflict” (New York: Penguin Random House, 2021). Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University in Baltimore.
Narcissists appear to be everywhere. A few minutes on the Internet shows the dangers of narcissistic romantic partners, friends, and employers. Identifying and limiting the reach of their manipulative and self-centered endeavors is cast as both urgent and necessary. The destructive powers of the narcissistic mother are viewed as especially in need of remedy, and any bookstore can reveal the risks they pose: “Will I Ever Be Good Enough? Healing the Daughters of Narcissistic Mothers;” “You’re Not Crazy – It’s Your Mother: Freedom for Daughters of Narcissistic Mothers;” “Healing for Daughters of Narcissistic Mothers: A Practical Guide on How to Recover from the Childhood Trauma of Toxic Relationship with Your Mother and How You Can Handle Her Abuse Now As An Adult” – to name just a few (there are more).
As a psychologist specializing in parental estrangement, I (Dr. Coleman) regularly see letters from adult children explaining their discovery-through-therapy that their mother is a narcissist. The proclamation often comes when the therapist has never met the mother. Typically, the discovery is presented as a justification for ending the relationship with the parent. While these mothers could rightly be accused of being anxious, over-involved, depressed, or hurt by the lack of gratitude or reciprocity, the vast majority are not narcissists.
Which begs the question, why are so many being labeled in this way? Are therapists only now discovering the power of narcissistic mothers? Have they always existed, casting their spells upon unwary children? Are those now-grown children only today able to disentangle themselves from the longstanding, pervasive, and harmful influence of these parents, with the help of therapy? Or is this the newest form of mommy shaming as it engages head-on with our Diagnostic and Statistical Manuals?
We believe it is the latter.
Blaming mothers has a long reach. Mothers have been blamed for causing schizophrenia, autism, homosexuality, and effeminacy in men. While we used to call people selfish and “controlling,” narcissism is a more consequential label as it confers diagnostic validity from the mental health profession. Worse, it suggests an individual beyond reach, where the only answer is distance, containment, or estrangement.
The rise of the narcissistic mother comes during a time when, for the past 4 decades, the average working mother spends more time with her children than stay-at-home moms did in the supposed halcyon days of the 1960s’ middle class, before “parenting” was a common term. A variety of economists and sociologists observed that an increase in parental effort became necessary to launch children into adulthood given the retreat of governmental and corporate support for parents that began in the 1980s.
“The financial and emotional burden on families has grown in ways that were almost unimaginable just a half-century ago,” writes the University of Pennsylvania sociologist Frank Furstenberg in “On a New Schedule: Transitions to Adulthood and Family Change.” In addition, a view of children as vulnerable and in need of intense parental investment gained momentum over the course of the 20th century and has continued unabated into the present. As a result, an environment of intense maternal preoccupation, worry, guilt, and involvement with children’s grades, safety, health, and emotional states – referred to as “helicopter” and “tiger” mothering – grew into the norm across the classes.
While prior generations of parents could, by today’s standards, be viewed as being insufficiently involved, today’s parents have become “over-involved” – aided by the ability of parents to be in constant contact with their adult children through technology. While this shift to a more hands-on, more conscientious parenting has been a boon to parent–adult child relationships in the main, the downside has meant, for some, too much of a good thing. From that perspective, pathologizing a mother’s involvement or her expressions of hurt for that child’s lack of availability provides a shield against the child’s feelings of guilt or obligation.
Diagnoses can serve a social purpose: They can allow individuals to use the authority of our profession to decide who to be close to and who to let go. They can provide insulation against feelings of obligation or guilt. They create a way to label behavior as dysfunctional that in other eras or cultures would be considered normal, even valued. To that extent, diagnoses don’t occur in a cultural void. They are inextricably tied to larger ideals, be they individualistic – as exists in the United States – or collectivist, as exists in many other parts of the world.
While we have decided what parents owe our children, it is unclear what parents might ask in return. To that end, mothers who want more interest, availability, or gratitude today are vulnerable to being cast as selfish, uncaring, needy, and controlling. They can now be viewed as failing in their task of selfless devotion. Their desires for closeness or repair can be regarded as incompatible with the quest for the adult child’s self-fulfillment and identity; her identification with her children too great a barrier to their individuation.
There may well be good reasons to estrange family members for their intolerable behaviors, especially ones who have threatened personal safety. Yet, while there are plenty of problematic parents, few meet the diagnostic criteria of narcissistic personality disorder. More important, such labels can discourage a discussion of boundaries that both the parents and the adult children might find acceptable – which sometimes means asking family members to tolerate behavior or individuals not to their liking.
Diagnoses carry enormous social weight and can facilitate estrangements or negativity to mothers that are far more workable than our patients’ characterization of them might lead them or us to believe. ; it devalues their years of love and dedication, however flawed; and it weakens the fabric of connection that could otherwise exist. Rather than provide a path toward compassion or understanding, “narcissistic mother” just becomes the latest form of mommy shaming.
Dr. Coleman is a clinical psychologist and author of “Rules of Estrangement: Why Adult Children Cut Ties and How to Heal the Conflict” (New York: Penguin Random House, 2021). Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University in Baltimore.
Narcissists appear to be everywhere. A few minutes on the Internet shows the dangers of narcissistic romantic partners, friends, and employers. Identifying and limiting the reach of their manipulative and self-centered endeavors is cast as both urgent and necessary. The destructive powers of the narcissistic mother are viewed as especially in need of remedy, and any bookstore can reveal the risks they pose: “Will I Ever Be Good Enough? Healing the Daughters of Narcissistic Mothers;” “You’re Not Crazy – It’s Your Mother: Freedom for Daughters of Narcissistic Mothers;” “Healing for Daughters of Narcissistic Mothers: A Practical Guide on How to Recover from the Childhood Trauma of Toxic Relationship with Your Mother and How You Can Handle Her Abuse Now As An Adult” – to name just a few (there are more).
As a psychologist specializing in parental estrangement, I (Dr. Coleman) regularly see letters from adult children explaining their discovery-through-therapy that their mother is a narcissist. The proclamation often comes when the therapist has never met the mother. Typically, the discovery is presented as a justification for ending the relationship with the parent. While these mothers could rightly be accused of being anxious, over-involved, depressed, or hurt by the lack of gratitude or reciprocity, the vast majority are not narcissists.
Which begs the question, why are so many being labeled in this way? Are therapists only now discovering the power of narcissistic mothers? Have they always existed, casting their spells upon unwary children? Are those now-grown children only today able to disentangle themselves from the longstanding, pervasive, and harmful influence of these parents, with the help of therapy? Or is this the newest form of mommy shaming as it engages head-on with our Diagnostic and Statistical Manuals?
We believe it is the latter.
Blaming mothers has a long reach. Mothers have been blamed for causing schizophrenia, autism, homosexuality, and effeminacy in men. While we used to call people selfish and “controlling,” narcissism is a more consequential label as it confers diagnostic validity from the mental health profession. Worse, it suggests an individual beyond reach, where the only answer is distance, containment, or estrangement.
The rise of the narcissistic mother comes during a time when, for the past 4 decades, the average working mother spends more time with her children than stay-at-home moms did in the supposed halcyon days of the 1960s’ middle class, before “parenting” was a common term. A variety of economists and sociologists observed that an increase in parental effort became necessary to launch children into adulthood given the retreat of governmental and corporate support for parents that began in the 1980s.
“The financial and emotional burden on families has grown in ways that were almost unimaginable just a half-century ago,” writes the University of Pennsylvania sociologist Frank Furstenberg in “On a New Schedule: Transitions to Adulthood and Family Change.” In addition, a view of children as vulnerable and in need of intense parental investment gained momentum over the course of the 20th century and has continued unabated into the present. As a result, an environment of intense maternal preoccupation, worry, guilt, and involvement with children’s grades, safety, health, and emotional states – referred to as “helicopter” and “tiger” mothering – grew into the norm across the classes.
While prior generations of parents could, by today’s standards, be viewed as being insufficiently involved, today’s parents have become “over-involved” – aided by the ability of parents to be in constant contact with their adult children through technology. While this shift to a more hands-on, more conscientious parenting has been a boon to parent–adult child relationships in the main, the downside has meant, for some, too much of a good thing. From that perspective, pathologizing a mother’s involvement or her expressions of hurt for that child’s lack of availability provides a shield against the child’s feelings of guilt or obligation.
Diagnoses can serve a social purpose: They can allow individuals to use the authority of our profession to decide who to be close to and who to let go. They can provide insulation against feelings of obligation or guilt. They create a way to label behavior as dysfunctional that in other eras or cultures would be considered normal, even valued. To that extent, diagnoses don’t occur in a cultural void. They are inextricably tied to larger ideals, be they individualistic – as exists in the United States – or collectivist, as exists in many other parts of the world.
While we have decided what parents owe our children, it is unclear what parents might ask in return. To that end, mothers who want more interest, availability, or gratitude today are vulnerable to being cast as selfish, uncaring, needy, and controlling. They can now be viewed as failing in their task of selfless devotion. Their desires for closeness or repair can be regarded as incompatible with the quest for the adult child’s self-fulfillment and identity; her identification with her children too great a barrier to their individuation.
There may well be good reasons to estrange family members for their intolerable behaviors, especially ones who have threatened personal safety. Yet, while there are plenty of problematic parents, few meet the diagnostic criteria of narcissistic personality disorder. More important, such labels can discourage a discussion of boundaries that both the parents and the adult children might find acceptable – which sometimes means asking family members to tolerate behavior or individuals not to their liking.
Diagnoses carry enormous social weight and can facilitate estrangements or negativity to mothers that are far more workable than our patients’ characterization of them might lead them or us to believe. ; it devalues their years of love and dedication, however flawed; and it weakens the fabric of connection that could otherwise exist. Rather than provide a path toward compassion or understanding, “narcissistic mother” just becomes the latest form of mommy shaming.
Dr. Coleman is a clinical psychologist and author of “Rules of Estrangement: Why Adult Children Cut Ties and How to Heal the Conflict” (New York: Penguin Random House, 2021). Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University in Baltimore.