User login
Cyclic Vomiting Syndrome and Primary Headache
Cyclic Vomiting Syndrome and Primary Headache
Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a very high risk of developing headache, mostly migraine, later in life. This according to a longitudinal study that assessed the rate of headache in patients presenting with cyclic vomiting syndrome and benign paroxysmal torticollis during infancy and defined the main clinical features of the disorder. Researchers administered a questionnaire to the parents of pediatric patients with previous diagnosis of cyclic vomiting syndrome and/or benign paroxysmal torticollis. They found:
- 82 patients with cyclic vomiting syndrome and 33 with benign paroxysmal torticollis were included in the final analysis.
- 79% of patients with cyclic vomiting syndrome presented with headache during the follow-up with a mean age at onset of 6 years.
- 67% of patients with benign paroxysmal torticollis suffered from headache during the follow-up with a mean age at onset of 5 years.
Moavero R, et al. Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a high risk of developing primary headache: A longitudinal study. [Published online ahead of print April 13, 2019]. Cephalalgia. doi: 10.1177/0333102419844542.
Cyclic Vomiting Syndrome and Primary Headache
Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a very high risk of developing headache, mostly migraine, later in life. This according to a longitudinal study that assessed the rate of headache in patients presenting with cyclic vomiting syndrome and benign paroxysmal torticollis during infancy and defined the main clinical features of the disorder. Researchers administered a questionnaire to the parents of pediatric patients with previous diagnosis of cyclic vomiting syndrome and/or benign paroxysmal torticollis. They found:
- 82 patients with cyclic vomiting syndrome and 33 with benign paroxysmal torticollis were included in the final analysis.
- 79% of patients with cyclic vomiting syndrome presented with headache during the follow-up with a mean age at onset of 6 years.
- 67% of patients with benign paroxysmal torticollis suffered from headache during the follow-up with a mean age at onset of 5 years.
Moavero R, et al. Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a high risk of developing primary headache: A longitudinal study. [Published online ahead of print April 13, 2019]. Cephalalgia. doi: 10.1177/0333102419844542.
Cyclic Vomiting Syndrome and Primary Headache
Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a very high risk of developing headache, mostly migraine, later in life. This according to a longitudinal study that assessed the rate of headache in patients presenting with cyclic vomiting syndrome and benign paroxysmal torticollis during infancy and defined the main clinical features of the disorder. Researchers administered a questionnaire to the parents of pediatric patients with previous diagnosis of cyclic vomiting syndrome and/or benign paroxysmal torticollis. They found:
- 82 patients with cyclic vomiting syndrome and 33 with benign paroxysmal torticollis were included in the final analysis.
- 79% of patients with cyclic vomiting syndrome presented with headache during the follow-up with a mean age at onset of 6 years.
- 67% of patients with benign paroxysmal torticollis suffered from headache during the follow-up with a mean age at onset of 5 years.
Moavero R, et al. Cyclic vomiting syndrome and benign paroxysmal torticollis are associated with a high risk of developing primary headache: A longitudinal study. [Published online ahead of print April 13, 2019]. Cephalalgia. doi: 10.1177/0333102419844542.
Migraine in Patients with Calcified Neurocysticercosis
The clinical characteristics of migraine attacks are sufficiently different in patients with and without neurocysticercosis, a new study found. Researchers investigated the characteristics of migraine attacks in patients with calcified neurocysticercosis (NCC) on brain imaging. Of 350 migraine patients, 166 had undergone brain imaging. Seventy-two patients with migraines had calcified NCC. The migraine attacks of the patients with calcification (MiC) were compared with those of 94 patients without calcification (MiNC). Among the findings:
- Side-locked headaches were seen in 48.6% of the MiC patients.
- Aura preceding the migraine attack was more common in the MiC group vs the MiNC group.
- The MiC group had fewer headache episodes per month with fewer common associated features and required fewer drugs for secondary prophylaxis.
Pradhan S, et al. Clinical characteristics of migraine in patients with calcified neurocysticercosis. [Published online ahead of print April 6, 2019]. Trans R Soc Trop Med Hyg. doi: 10.1093/trstmh/trz018.
The clinical characteristics of migraine attacks are sufficiently different in patients with and without neurocysticercosis, a new study found. Researchers investigated the characteristics of migraine attacks in patients with calcified neurocysticercosis (NCC) on brain imaging. Of 350 migraine patients, 166 had undergone brain imaging. Seventy-two patients with migraines had calcified NCC. The migraine attacks of the patients with calcification (MiC) were compared with those of 94 patients without calcification (MiNC). Among the findings:
- Side-locked headaches were seen in 48.6% of the MiC patients.
- Aura preceding the migraine attack was more common in the MiC group vs the MiNC group.
- The MiC group had fewer headache episodes per month with fewer common associated features and required fewer drugs for secondary prophylaxis.
Pradhan S, et al. Clinical characteristics of migraine in patients with calcified neurocysticercosis. [Published online ahead of print April 6, 2019]. Trans R Soc Trop Med Hyg. doi: 10.1093/trstmh/trz018.
The clinical characteristics of migraine attacks are sufficiently different in patients with and without neurocysticercosis, a new study found. Researchers investigated the characteristics of migraine attacks in patients with calcified neurocysticercosis (NCC) on brain imaging. Of 350 migraine patients, 166 had undergone brain imaging. Seventy-two patients with migraines had calcified NCC. The migraine attacks of the patients with calcification (MiC) were compared with those of 94 patients without calcification (MiNC). Among the findings:
- Side-locked headaches were seen in 48.6% of the MiC patients.
- Aura preceding the migraine attack was more common in the MiC group vs the MiNC group.
- The MiC group had fewer headache episodes per month with fewer common associated features and required fewer drugs for secondary prophylaxis.
Pradhan S, et al. Clinical characteristics of migraine in patients with calcified neurocysticercosis. [Published online ahead of print April 6, 2019]. Trans R Soc Trop Med Hyg. doi: 10.1093/trstmh/trz018.
Modest cognitive changes deemed inherent in ‘normal’ aging
Interventions leading to improved gray matter volume tied to reducing dementia risk
CRYSTAL CITY, VA. – As technology advances and the population becomes older, clinicians should understand how modest age-related declines in cognition affect older adults’ ability to learn new technological skills, Philip D. Harvey, PhD, said at Focus on Neuropsychiatry presented by Current Psychiatry and the American Academy of Clinical Psychiatrists.
According to the U.S. Census Bureau, the number of adults in the United States above age 65 is slated to increase over the next several decades, and by 2030, one in five adults in the United States will be at retirement age. By 2050, “a significant number of people” in the United States are expected to be age 90, Dr. Harvey said at the meeting, presented by Global Academy for Medical Education.
“What we need to do is to understand what are the normal things that happen to people as they become 90 years of age,” said Dr. Harvey, of the department of psychiatry and behavioral sciences at the University of Miami.
Within the technology industry, significant advancements were made over the last 40 years with the advent of the personal computer in the 1980s, mobile phones in the 1990s, and wireless Internet, smartphones, and wireless devices in the 2000s. Many interactions that used to be person-to-person are now performed online, and it is feasible for a 90-year-old living today to never have encountered this technology during their careers. “Utilizing technology is a central requirement for independent living today,” Dr. Harvey said.
Most people passively adapt to these new changes in technology. However, Dr. Harvey noted that adults in their 80s and 90s who are retired can have difficulty using or learning about new technology as they age. “Human-technology interaction involves information processing, and places demands on memory and other cognitive abilities,” he said. “Age is associated with declines specifically in the kind of abilities that are required to master new technology.”
Learning about and using technology requires different elements of cognition that include different types of memory, such as working, episodic, declarative, procedural, semantic, long-term factual, and emotional. A decline in any of those kinds of memory could result in failures in forgetting, learning or recalling material, and learning new motor skills, among other problems. Crystallized intelligence is more likely to be retained over time, but fluid cognition in the form of processing speed, working and episodic memory, and the ability to solve abstract problems tend to decline over time as people age, Dr. Harvey said.
Base cognitive abilities do play a role in how crystallized and fluid cognition decline over time. For example, while vocabulary might increase as one ages, a person’s working memory, processing speed, and episodic memory decline over time. Evidence also suggests that speed training and exercise appear to improve cognition. (J Am Geriatr Soc. 13 Jan 2014. doi: 10.1111/jgs.12607).
Cyrus Raji, MD, PhD, and colleagues also explored the relationship between caloric expenditure and gray matter volume in the Cardiovascular Health Study, and found that exercise of various types improved gray matter volume and reduced the risk of dementia in people aged 65 or older. Furthermore, Dr. Raji and colleagues found, caloric expenditures, rather than intensity of exercise, may alone predict increases in gray matter volume (J Alzheimers Dis. 2016. doi: 10.3233/JAD-160057).
“If you want to improve your memory, grow your hippocampus,” Dr. Harvey said at the meeting.
Dr. Harvey reported serving as a consultant for Alkermes, Boehringer-Ingelheim, Lundbeck, Otsuka Digital Health, Sanofi, Sunovion Pharmaceuticals, Takeda, and Teva. He also reported receiving a grant from Takeda, and is the founder and CSO of i-Function.
Global Academy and this news organization are owned by the same parent company.
Interventions leading to improved gray matter volume tied to reducing dementia risk
Interventions leading to improved gray matter volume tied to reducing dementia risk
CRYSTAL CITY, VA. – As technology advances and the population becomes older, clinicians should understand how modest age-related declines in cognition affect older adults’ ability to learn new technological skills, Philip D. Harvey, PhD, said at Focus on Neuropsychiatry presented by Current Psychiatry and the American Academy of Clinical Psychiatrists.
According to the U.S. Census Bureau, the number of adults in the United States above age 65 is slated to increase over the next several decades, and by 2030, one in five adults in the United States will be at retirement age. By 2050, “a significant number of people” in the United States are expected to be age 90, Dr. Harvey said at the meeting, presented by Global Academy for Medical Education.
“What we need to do is to understand what are the normal things that happen to people as they become 90 years of age,” said Dr. Harvey, of the department of psychiatry and behavioral sciences at the University of Miami.
Within the technology industry, significant advancements were made over the last 40 years with the advent of the personal computer in the 1980s, mobile phones in the 1990s, and wireless Internet, smartphones, and wireless devices in the 2000s. Many interactions that used to be person-to-person are now performed online, and it is feasible for a 90-year-old living today to never have encountered this technology during their careers. “Utilizing technology is a central requirement for independent living today,” Dr. Harvey said.
Most people passively adapt to these new changes in technology. However, Dr. Harvey noted that adults in their 80s and 90s who are retired can have difficulty using or learning about new technology as they age. “Human-technology interaction involves information processing, and places demands on memory and other cognitive abilities,” he said. “Age is associated with declines specifically in the kind of abilities that are required to master new technology.”
Learning about and using technology requires different elements of cognition that include different types of memory, such as working, episodic, declarative, procedural, semantic, long-term factual, and emotional. A decline in any of those kinds of memory could result in failures in forgetting, learning or recalling material, and learning new motor skills, among other problems. Crystallized intelligence is more likely to be retained over time, but fluid cognition in the form of processing speed, working and episodic memory, and the ability to solve abstract problems tend to decline over time as people age, Dr. Harvey said.
Base cognitive abilities do play a role in how crystallized and fluid cognition decline over time. For example, while vocabulary might increase as one ages, a person’s working memory, processing speed, and episodic memory decline over time. Evidence also suggests that speed training and exercise appear to improve cognition. (J Am Geriatr Soc. 13 Jan 2014. doi: 10.1111/jgs.12607).
Cyrus Raji, MD, PhD, and colleagues also explored the relationship between caloric expenditure and gray matter volume in the Cardiovascular Health Study, and found that exercise of various types improved gray matter volume and reduced the risk of dementia in people aged 65 or older. Furthermore, Dr. Raji and colleagues found, caloric expenditures, rather than intensity of exercise, may alone predict increases in gray matter volume (J Alzheimers Dis. 2016. doi: 10.3233/JAD-160057).
“If you want to improve your memory, grow your hippocampus,” Dr. Harvey said at the meeting.
Dr. Harvey reported serving as a consultant for Alkermes, Boehringer-Ingelheim, Lundbeck, Otsuka Digital Health, Sanofi, Sunovion Pharmaceuticals, Takeda, and Teva. He also reported receiving a grant from Takeda, and is the founder and CSO of i-Function.
Global Academy and this news organization are owned by the same parent company.
CRYSTAL CITY, VA. – As technology advances and the population becomes older, clinicians should understand how modest age-related declines in cognition affect older adults’ ability to learn new technological skills, Philip D. Harvey, PhD, said at Focus on Neuropsychiatry presented by Current Psychiatry and the American Academy of Clinical Psychiatrists.
According to the U.S. Census Bureau, the number of adults in the United States above age 65 is slated to increase over the next several decades, and by 2030, one in five adults in the United States will be at retirement age. By 2050, “a significant number of people” in the United States are expected to be age 90, Dr. Harvey said at the meeting, presented by Global Academy for Medical Education.
“What we need to do is to understand what are the normal things that happen to people as they become 90 years of age,” said Dr. Harvey, of the department of psychiatry and behavioral sciences at the University of Miami.
Within the technology industry, significant advancements were made over the last 40 years with the advent of the personal computer in the 1980s, mobile phones in the 1990s, and wireless Internet, smartphones, and wireless devices in the 2000s. Many interactions that used to be person-to-person are now performed online, and it is feasible for a 90-year-old living today to never have encountered this technology during their careers. “Utilizing technology is a central requirement for independent living today,” Dr. Harvey said.
Most people passively adapt to these new changes in technology. However, Dr. Harvey noted that adults in their 80s and 90s who are retired can have difficulty using or learning about new technology as they age. “Human-technology interaction involves information processing, and places demands on memory and other cognitive abilities,” he said. “Age is associated with declines specifically in the kind of abilities that are required to master new technology.”
Learning about and using technology requires different elements of cognition that include different types of memory, such as working, episodic, declarative, procedural, semantic, long-term factual, and emotional. A decline in any of those kinds of memory could result in failures in forgetting, learning or recalling material, and learning new motor skills, among other problems. Crystallized intelligence is more likely to be retained over time, but fluid cognition in the form of processing speed, working and episodic memory, and the ability to solve abstract problems tend to decline over time as people age, Dr. Harvey said.
Base cognitive abilities do play a role in how crystallized and fluid cognition decline over time. For example, while vocabulary might increase as one ages, a person’s working memory, processing speed, and episodic memory decline over time. Evidence also suggests that speed training and exercise appear to improve cognition. (J Am Geriatr Soc. 13 Jan 2014. doi: 10.1111/jgs.12607).
Cyrus Raji, MD, PhD, and colleagues also explored the relationship between caloric expenditure and gray matter volume in the Cardiovascular Health Study, and found that exercise of various types improved gray matter volume and reduced the risk of dementia in people aged 65 or older. Furthermore, Dr. Raji and colleagues found, caloric expenditures, rather than intensity of exercise, may alone predict increases in gray matter volume (J Alzheimers Dis. 2016. doi: 10.3233/JAD-160057).
“If you want to improve your memory, grow your hippocampus,” Dr. Harvey said at the meeting.
Dr. Harvey reported serving as a consultant for Alkermes, Boehringer-Ingelheim, Lundbeck, Otsuka Digital Health, Sanofi, Sunovion Pharmaceuticals, Takeda, and Teva. He also reported receiving a grant from Takeda, and is the founder and CSO of i-Function.
Global Academy and this news organization are owned by the same parent company.
REPORTING FROM FOCUS ON NEUROPSYCHIATRY 2019
Patient registry sheds light on the economic impact of MS
SEATTLE –
“MS seems to prevent people with MS from realizing their full potential at work or home,” said study coauthor Kottil Rammohan, MD, who summarized the study results in a video interview. Dr. Rammohan is professor of clinical neurology, director of the MS center of excellence, and chief of the multiple sclerosis division at the University of Miami. The study findings were presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.
The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) prospectively collects information about the health care economics of patients with MS and its effects on daily life. In 2017, NARCRMS established the health care economics outcomes research (HEOR) advisory group. NARCRMS developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire. The questionnaires were incorporated into the existing case report forms that are completed by patients at enrollment, annual, and exacerbation visits.
This analysis was based on 480 patients who had completed HEOR case report forms. Among those, 77% are employed either full or part time; however, of those 15% were underemployed, meaning they wanted to work more than their current work levels. About 13% are on disability.
“What we found was there was a significant impact at home as well,” said Dr. Rammohan. Patients reported that MS kept them from completing household chores. “MS is a disease that seems to impact not only the work environment, but also the home environment.”
When polled to determine the main reason why these MS patients are not able to function, “what we found was that it was not because of gait or immobility, it was difficulty related to fatigue,” Dr. Rammohan said. The second most common impairment was related to cognition.
“These are what we call the silent or the transparent symptoms of MS.”
Dr. Rammohan disclosed consulting fees from EMD Serono, Biogen, Sanofi-Aventis, Genzyme, Novartis, Teva Neurosciences, Acorda, and Roche/Genentech.
SEATTLE –
“MS seems to prevent people with MS from realizing their full potential at work or home,” said study coauthor Kottil Rammohan, MD, who summarized the study results in a video interview. Dr. Rammohan is professor of clinical neurology, director of the MS center of excellence, and chief of the multiple sclerosis division at the University of Miami. The study findings were presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.
The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) prospectively collects information about the health care economics of patients with MS and its effects on daily life. In 2017, NARCRMS established the health care economics outcomes research (HEOR) advisory group. NARCRMS developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire. The questionnaires were incorporated into the existing case report forms that are completed by patients at enrollment, annual, and exacerbation visits.
This analysis was based on 480 patients who had completed HEOR case report forms. Among those, 77% are employed either full or part time; however, of those 15% were underemployed, meaning they wanted to work more than their current work levels. About 13% are on disability.
“What we found was there was a significant impact at home as well,” said Dr. Rammohan. Patients reported that MS kept them from completing household chores. “MS is a disease that seems to impact not only the work environment, but also the home environment.”
When polled to determine the main reason why these MS patients are not able to function, “what we found was that it was not because of gait or immobility, it was difficulty related to fatigue,” Dr. Rammohan said. The second most common impairment was related to cognition.
“These are what we call the silent or the transparent symptoms of MS.”
Dr. Rammohan disclosed consulting fees from EMD Serono, Biogen, Sanofi-Aventis, Genzyme, Novartis, Teva Neurosciences, Acorda, and Roche/Genentech.
SEATTLE –
“MS seems to prevent people with MS from realizing their full potential at work or home,” said study coauthor Kottil Rammohan, MD, who summarized the study results in a video interview. Dr. Rammohan is professor of clinical neurology, director of the MS center of excellence, and chief of the multiple sclerosis division at the University of Miami. The study findings were presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.
The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) prospectively collects information about the health care economics of patients with MS and its effects on daily life. In 2017, NARCRMS established the health care economics outcomes research (HEOR) advisory group. NARCRMS developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire. The questionnaires were incorporated into the existing case report forms that are completed by patients at enrollment, annual, and exacerbation visits.
This analysis was based on 480 patients who had completed HEOR case report forms. Among those, 77% are employed either full or part time; however, of those 15% were underemployed, meaning they wanted to work more than their current work levels. About 13% are on disability.
“What we found was there was a significant impact at home as well,” said Dr. Rammohan. Patients reported that MS kept them from completing household chores. “MS is a disease that seems to impact not only the work environment, but also the home environment.”
When polled to determine the main reason why these MS patients are not able to function, “what we found was that it was not because of gait or immobility, it was difficulty related to fatigue,” Dr. Rammohan said. The second most common impairment was related to cognition.
“These are what we call the silent or the transparent symptoms of MS.”
Dr. Rammohan disclosed consulting fees from EMD Serono, Biogen, Sanofi-Aventis, Genzyme, Novartis, Teva Neurosciences, Acorda, and Roche/Genentech.
EXPERT ANALYSIS FROM CMSC 2019
Leading By Example: How Medical Journals Can Improve Representation in Academic Medicine
Women and racial and ethnic minorities remain underrepresented in senior faculty roles and academic leadership positions.1 Participation in peer review and publication in medical journals are important components of academic advancement that are emphasized in the promotion process. These efforts offer recognition of expertise and increase visibility in the scientific community, which may enhance opportunities for networking and collaboration, and provide other opportunities for career advancement. In addition, abundant evidence shows that organizations benefit from diverse teams, with better quality decisions and increased productivity resulting from diverse ideas and perspectives.2
Numerous studies have highlighted the prevalence and persistence of disparities in peer review and authorship.3,4 Much of this work has focused on gender though gaps in these measures likely exist for racial and ethnic minorities. Yet, there are few examples of journals implementing strategies to address disparities and track results of such efforts.5 While institutional barriers to advancement must be addressed, we believe that medical journals have an obligation to address unequal opportunities.
At the Journal of Hospital Medicine, we are committed to leading by example and developing approaches to create equity in all facets of journal leadership and authorship.6 The first step towards progress is to assess the current representation of women and racial and ethnic minorities in our journal community, including first and senior authors, invited expert contributors, reviewers, and editorial team members. Like most journals, we have not collected demographic information from authors or reviewers. But now, as part of the journal’s commitment to this cause, we request that everyone in the journal community (author, reviewer, editor) update their journal account (accessible at https://mc.manuscriptcentral.com/jhm) with demographic data, including gender, race, and ethnicity.
Inclusion of these data is voluntary. While each individual will be able to access and edit their personal demographic data, the individual data will remain private and unviewable to others. As such, it will not be available for nor will it be used in the manuscript review or decision process but rather for assessing our own inclusiveness. We will review these data in aggregate to broadly inform outreach efforts to promote diversity and inclusion in our author, invited expert contributor, reviewer, and journal leadership pools. We will report on the progress of these efforts in upcoming years.
We are committed to equity in providing opportunities for academic advancement across the journal community. Diversity and inclusion are important in raising the quality of the work that we publish. Different perspectives strengthen our journal and will help us continue to advance the field of Hospital Medicine.
Disclosures
The authors have nothing to disclose.
1. American Association of Medical Colleges. U.S. Medical School Faculty, 2018. https://www.aamc.org/data/facultyroster/reports/494946/usmsf18.html. Accessed May 6, 2019.
2. Turban S, Wu D, Zhang L. “When Gender Diversity Makes Firms More Productive” Harvard Business Review Feb 2019. https://hbr.org/2019/02/research-when-gender-diversity-makes-firms-more-productive. Accessed May 6, 2019.
3. Silver JK, Poorman JA, Reilly JM, Spector ND, Goldstein R, Zafonte RD. Assessment of women physicians among authors of perspective-type articles published in high-impact pediatric journals. JAMA Netw Open. 2018;1(3):e180802. doi: 10.1001/jamanetworkopen.2018.0802. PubMed
4. Jagsi R, Guancial EA, Worobey CC, Henault LE, Chang Y, Starr R, Tarbell NJ, Hylek EM. The “gender gap” in authorship of academic medical literature- a 35-year perspective. N Engl J Med. 2006;355(3):281-287. doi: 10.1056/NEJMsa053910. PubMed
5. Nature’s under-representation of women. Nature. 2018;558:344. doi: 10.1038/d41586-018-05465-7. PubMed
6. Shah SS. The Journal of Hospital Medicine in 2019 and beyond. J Hosp Med. 2019;14(1):7. doi: 10.12788/jhm.3143. PubMed
Women and racial and ethnic minorities remain underrepresented in senior faculty roles and academic leadership positions.1 Participation in peer review and publication in medical journals are important components of academic advancement that are emphasized in the promotion process. These efforts offer recognition of expertise and increase visibility in the scientific community, which may enhance opportunities for networking and collaboration, and provide other opportunities for career advancement. In addition, abundant evidence shows that organizations benefit from diverse teams, with better quality decisions and increased productivity resulting from diverse ideas and perspectives.2
Numerous studies have highlighted the prevalence and persistence of disparities in peer review and authorship.3,4 Much of this work has focused on gender though gaps in these measures likely exist for racial and ethnic minorities. Yet, there are few examples of journals implementing strategies to address disparities and track results of such efforts.5 While institutional barriers to advancement must be addressed, we believe that medical journals have an obligation to address unequal opportunities.
At the Journal of Hospital Medicine, we are committed to leading by example and developing approaches to create equity in all facets of journal leadership and authorship.6 The first step towards progress is to assess the current representation of women and racial and ethnic minorities in our journal community, including first and senior authors, invited expert contributors, reviewers, and editorial team members. Like most journals, we have not collected demographic information from authors or reviewers. But now, as part of the journal’s commitment to this cause, we request that everyone in the journal community (author, reviewer, editor) update their journal account (accessible at https://mc.manuscriptcentral.com/jhm) with demographic data, including gender, race, and ethnicity.
Inclusion of these data is voluntary. While each individual will be able to access and edit their personal demographic data, the individual data will remain private and unviewable to others. As such, it will not be available for nor will it be used in the manuscript review or decision process but rather for assessing our own inclusiveness. We will review these data in aggregate to broadly inform outreach efforts to promote diversity and inclusion in our author, invited expert contributor, reviewer, and journal leadership pools. We will report on the progress of these efforts in upcoming years.
We are committed to equity in providing opportunities for academic advancement across the journal community. Diversity and inclusion are important in raising the quality of the work that we publish. Different perspectives strengthen our journal and will help us continue to advance the field of Hospital Medicine.
Disclosures
The authors have nothing to disclose.
Women and racial and ethnic minorities remain underrepresented in senior faculty roles and academic leadership positions.1 Participation in peer review and publication in medical journals are important components of academic advancement that are emphasized in the promotion process. These efforts offer recognition of expertise and increase visibility in the scientific community, which may enhance opportunities for networking and collaboration, and provide other opportunities for career advancement. In addition, abundant evidence shows that organizations benefit from diverse teams, with better quality decisions and increased productivity resulting from diverse ideas and perspectives.2
Numerous studies have highlighted the prevalence and persistence of disparities in peer review and authorship.3,4 Much of this work has focused on gender though gaps in these measures likely exist for racial and ethnic minorities. Yet, there are few examples of journals implementing strategies to address disparities and track results of such efforts.5 While institutional barriers to advancement must be addressed, we believe that medical journals have an obligation to address unequal opportunities.
At the Journal of Hospital Medicine, we are committed to leading by example and developing approaches to create equity in all facets of journal leadership and authorship.6 The first step towards progress is to assess the current representation of women and racial and ethnic minorities in our journal community, including first and senior authors, invited expert contributors, reviewers, and editorial team members. Like most journals, we have not collected demographic information from authors or reviewers. But now, as part of the journal’s commitment to this cause, we request that everyone in the journal community (author, reviewer, editor) update their journal account (accessible at https://mc.manuscriptcentral.com/jhm) with demographic data, including gender, race, and ethnicity.
Inclusion of these data is voluntary. While each individual will be able to access and edit their personal demographic data, the individual data will remain private and unviewable to others. As such, it will not be available for nor will it be used in the manuscript review or decision process but rather for assessing our own inclusiveness. We will review these data in aggregate to broadly inform outreach efforts to promote diversity and inclusion in our author, invited expert contributor, reviewer, and journal leadership pools. We will report on the progress of these efforts in upcoming years.
We are committed to equity in providing opportunities for academic advancement across the journal community. Diversity and inclusion are important in raising the quality of the work that we publish. Different perspectives strengthen our journal and will help us continue to advance the field of Hospital Medicine.
Disclosures
The authors have nothing to disclose.
1. American Association of Medical Colleges. U.S. Medical School Faculty, 2018. https://www.aamc.org/data/facultyroster/reports/494946/usmsf18.html. Accessed May 6, 2019.
2. Turban S, Wu D, Zhang L. “When Gender Diversity Makes Firms More Productive” Harvard Business Review Feb 2019. https://hbr.org/2019/02/research-when-gender-diversity-makes-firms-more-productive. Accessed May 6, 2019.
3. Silver JK, Poorman JA, Reilly JM, Spector ND, Goldstein R, Zafonte RD. Assessment of women physicians among authors of perspective-type articles published in high-impact pediatric journals. JAMA Netw Open. 2018;1(3):e180802. doi: 10.1001/jamanetworkopen.2018.0802. PubMed
4. Jagsi R, Guancial EA, Worobey CC, Henault LE, Chang Y, Starr R, Tarbell NJ, Hylek EM. The “gender gap” in authorship of academic medical literature- a 35-year perspective. N Engl J Med. 2006;355(3):281-287. doi: 10.1056/NEJMsa053910. PubMed
5. Nature’s under-representation of women. Nature. 2018;558:344. doi: 10.1038/d41586-018-05465-7. PubMed
6. Shah SS. The Journal of Hospital Medicine in 2019 and beyond. J Hosp Med. 2019;14(1):7. doi: 10.12788/jhm.3143. PubMed
1. American Association of Medical Colleges. U.S. Medical School Faculty, 2018. https://www.aamc.org/data/facultyroster/reports/494946/usmsf18.html. Accessed May 6, 2019.
2. Turban S, Wu D, Zhang L. “When Gender Diversity Makes Firms More Productive” Harvard Business Review Feb 2019. https://hbr.org/2019/02/research-when-gender-diversity-makes-firms-more-productive. Accessed May 6, 2019.
3. Silver JK, Poorman JA, Reilly JM, Spector ND, Goldstein R, Zafonte RD. Assessment of women physicians among authors of perspective-type articles published in high-impact pediatric journals. JAMA Netw Open. 2018;1(3):e180802. doi: 10.1001/jamanetworkopen.2018.0802. PubMed
4. Jagsi R, Guancial EA, Worobey CC, Henault LE, Chang Y, Starr R, Tarbell NJ, Hylek EM. The “gender gap” in authorship of academic medical literature- a 35-year perspective. N Engl J Med. 2006;355(3):281-287. doi: 10.1056/NEJMsa053910. PubMed
5. Nature’s under-representation of women. Nature. 2018;558:344. doi: 10.1038/d41586-018-05465-7. PubMed
6. Shah SS. The Journal of Hospital Medicine in 2019 and beyond. J Hosp Med. 2019;14(1):7. doi: 10.12788/jhm.3143. PubMed
© 2019 Society of Hospital Medicine
Obinutuzumab provides strong early responses in untreated MCL
Amsterdam – For patients with untreated mantle cell lymphoma (MCL), the anti-CD20 monoclonal antibody obinutuzumab may one day offer an alternative to rituximab, according to investigators.
Patients in the LYMA-101 trial were given four cycles of obinutuzumab in combination with dexamethasone, high-dose aracytine, and platinum chemotherapy (O-DHAP), followed by autologous stem cell transplantation (ASCT) and maintenance obinutuzumab. After a median follow-up of 14.6 months, ranging from 3.8 to 24.4 months, 85% of evaluable patients had achieved minimal residual disease (MRD) in bone marrow, reported lead author Steven Le Gouill, MD, PhD, of the University Hospital of Nantes, and his colleagues.
In this disease population, an MRD rate of 85% is “unprecedented,” Dr. Le Gouill said during his presentation at the annual congress of the European Hematology Association. Based on findings from LYMA-101 and preclinical data, Dr. Le Gouill suggested that obinutuzumab may become an alternative to rituximab, the current standard anti-CD20 antibody.
“There are few data of interest for obinutuzumab in MCL, but there is a strong rationale in the lab as obinutuzumab has a different mechanism of action against tumor cells [than rituximab], with more efficacy against MCL cells,” Dr. Le Gouill said.
Data from the ongoing phase 2 trial were drawn from 85 patients with untreated MCL who were 65 years or younger at the time of enrollment. More specifically, median patient age was 55.5 years and 17.4% of patients had blastoid disease. All patients were given the O-DHAP/ASCT/obinutuzumab protocol, with a maintenance period of 3 years. Thereafter, MRD-positive patients may receive obinutuzumab on-demand.
The primary endpoint was MRD in bone marrow after induction therapy, measured by quantitative PCR (qPCR) and droplet digital PCR (ddPCR). Secondary endpoints included response rates, survival measures, incidence of stem cell collection failure after O-DHAP, and MRD rates at additional therapeutic time points.
Owing to the ongoing nature of the study, Dr. Le Gouill focused on the primary endpoint during his presentation.
Analysis showed that 75% and 85% of evaluable patients had achieved negative MRD in bone marrow after induction, according to qPCR and ddPCR, respectively.
These early findings give “a flavor of the results in terms of efficacy,” Dr. Le Gouill said, noting that “the median follow-up is pretty short.”
Still, 1-year findings were “very promising,” he said, with a progression-free survival of 93.4% and overall survival of 96%.
Twelve patients stopped treatment before ASCT, three prior to maintenance, and nine during maintenance. Of these 24 patients, 13 stopped treatment because of adverse events. The remaining 11 patients halted therapy because of disease progression, other malignancies, or death.
From the original 85 patients, 3 patients died and 3 progressed. Considering all of these findings, and that no major toxicities were encountered, the investigators concluded that the regimen was safe.
Overall, the results suggest that further research is needed, Dr. Le Gouill concluded. “Maybe this is where obinutuzumab may have stronger efficacy in MCL, as compared to rituximab,” he said.
The study is sponsored by the Lymphoma Academic Research Organisation. The investigators reported relationships with Roche, Janssen-Cilag, Gilead, Servier, and Novartis.
SOURCE: Le Gouill S et al. EHA Congress, Abstract S103.
Amsterdam – For patients with untreated mantle cell lymphoma (MCL), the anti-CD20 monoclonal antibody obinutuzumab may one day offer an alternative to rituximab, according to investigators.
Patients in the LYMA-101 trial were given four cycles of obinutuzumab in combination with dexamethasone, high-dose aracytine, and platinum chemotherapy (O-DHAP), followed by autologous stem cell transplantation (ASCT) and maintenance obinutuzumab. After a median follow-up of 14.6 months, ranging from 3.8 to 24.4 months, 85% of evaluable patients had achieved minimal residual disease (MRD) in bone marrow, reported lead author Steven Le Gouill, MD, PhD, of the University Hospital of Nantes, and his colleagues.
In this disease population, an MRD rate of 85% is “unprecedented,” Dr. Le Gouill said during his presentation at the annual congress of the European Hematology Association. Based on findings from LYMA-101 and preclinical data, Dr. Le Gouill suggested that obinutuzumab may become an alternative to rituximab, the current standard anti-CD20 antibody.
“There are few data of interest for obinutuzumab in MCL, but there is a strong rationale in the lab as obinutuzumab has a different mechanism of action against tumor cells [than rituximab], with more efficacy against MCL cells,” Dr. Le Gouill said.
Data from the ongoing phase 2 trial were drawn from 85 patients with untreated MCL who were 65 years or younger at the time of enrollment. More specifically, median patient age was 55.5 years and 17.4% of patients had blastoid disease. All patients were given the O-DHAP/ASCT/obinutuzumab protocol, with a maintenance period of 3 years. Thereafter, MRD-positive patients may receive obinutuzumab on-demand.
The primary endpoint was MRD in bone marrow after induction therapy, measured by quantitative PCR (qPCR) and droplet digital PCR (ddPCR). Secondary endpoints included response rates, survival measures, incidence of stem cell collection failure after O-DHAP, and MRD rates at additional therapeutic time points.
Owing to the ongoing nature of the study, Dr. Le Gouill focused on the primary endpoint during his presentation.
Analysis showed that 75% and 85% of evaluable patients had achieved negative MRD in bone marrow after induction, according to qPCR and ddPCR, respectively.
These early findings give “a flavor of the results in terms of efficacy,” Dr. Le Gouill said, noting that “the median follow-up is pretty short.”
Still, 1-year findings were “very promising,” he said, with a progression-free survival of 93.4% and overall survival of 96%.
Twelve patients stopped treatment before ASCT, three prior to maintenance, and nine during maintenance. Of these 24 patients, 13 stopped treatment because of adverse events. The remaining 11 patients halted therapy because of disease progression, other malignancies, or death.
From the original 85 patients, 3 patients died and 3 progressed. Considering all of these findings, and that no major toxicities were encountered, the investigators concluded that the regimen was safe.
Overall, the results suggest that further research is needed, Dr. Le Gouill concluded. “Maybe this is where obinutuzumab may have stronger efficacy in MCL, as compared to rituximab,” he said.
The study is sponsored by the Lymphoma Academic Research Organisation. The investigators reported relationships with Roche, Janssen-Cilag, Gilead, Servier, and Novartis.
SOURCE: Le Gouill S et al. EHA Congress, Abstract S103.
Amsterdam – For patients with untreated mantle cell lymphoma (MCL), the anti-CD20 monoclonal antibody obinutuzumab may one day offer an alternative to rituximab, according to investigators.
Patients in the LYMA-101 trial were given four cycles of obinutuzumab in combination with dexamethasone, high-dose aracytine, and platinum chemotherapy (O-DHAP), followed by autologous stem cell transplantation (ASCT) and maintenance obinutuzumab. After a median follow-up of 14.6 months, ranging from 3.8 to 24.4 months, 85% of evaluable patients had achieved minimal residual disease (MRD) in bone marrow, reported lead author Steven Le Gouill, MD, PhD, of the University Hospital of Nantes, and his colleagues.
In this disease population, an MRD rate of 85% is “unprecedented,” Dr. Le Gouill said during his presentation at the annual congress of the European Hematology Association. Based on findings from LYMA-101 and preclinical data, Dr. Le Gouill suggested that obinutuzumab may become an alternative to rituximab, the current standard anti-CD20 antibody.
“There are few data of interest for obinutuzumab in MCL, but there is a strong rationale in the lab as obinutuzumab has a different mechanism of action against tumor cells [than rituximab], with more efficacy against MCL cells,” Dr. Le Gouill said.
Data from the ongoing phase 2 trial were drawn from 85 patients with untreated MCL who were 65 years or younger at the time of enrollment. More specifically, median patient age was 55.5 years and 17.4% of patients had blastoid disease. All patients were given the O-DHAP/ASCT/obinutuzumab protocol, with a maintenance period of 3 years. Thereafter, MRD-positive patients may receive obinutuzumab on-demand.
The primary endpoint was MRD in bone marrow after induction therapy, measured by quantitative PCR (qPCR) and droplet digital PCR (ddPCR). Secondary endpoints included response rates, survival measures, incidence of stem cell collection failure after O-DHAP, and MRD rates at additional therapeutic time points.
Owing to the ongoing nature of the study, Dr. Le Gouill focused on the primary endpoint during his presentation.
Analysis showed that 75% and 85% of evaluable patients had achieved negative MRD in bone marrow after induction, according to qPCR and ddPCR, respectively.
These early findings give “a flavor of the results in terms of efficacy,” Dr. Le Gouill said, noting that “the median follow-up is pretty short.”
Still, 1-year findings were “very promising,” he said, with a progression-free survival of 93.4% and overall survival of 96%.
Twelve patients stopped treatment before ASCT, three prior to maintenance, and nine during maintenance. Of these 24 patients, 13 stopped treatment because of adverse events. The remaining 11 patients halted therapy because of disease progression, other malignancies, or death.
From the original 85 patients, 3 patients died and 3 progressed. Considering all of these findings, and that no major toxicities were encountered, the investigators concluded that the regimen was safe.
Overall, the results suggest that further research is needed, Dr. Le Gouill concluded. “Maybe this is where obinutuzumab may have stronger efficacy in MCL, as compared to rituximab,” he said.
The study is sponsored by the Lymphoma Academic Research Organisation. The investigators reported relationships with Roche, Janssen-Cilag, Gilead, Servier, and Novartis.
SOURCE: Le Gouill S et al. EHA Congress, Abstract S103.
REPORTING FROM EHA CONGRESS
Key clinical point:
Major finding: Out of 73 patients, 62 (85%) achieved negative minimal residual disease (MRD) in bone marrow based on ddPCR.
Study details: LYMA-101 is an ongoing phase 2 trial involving 85 patients with untreated mantle cell lymphoma.
Disclosures: The investigators reported relationships with Roche, Janssen-Cilag, Gilead, Servier, and Novartis.
Source: Le Gouill S et al. EHA Congress, Abstract S103.
Effects of Smartphone Overuse in Patients with Migraine
Smartphone overuse in patients with migraine is related to poor sleep quality and daytime sleepiness, resulting in diminished quality of life, a new study found. The single-center, cross-sectional comparative study used the migraine disability assessment (MIDAS) questionnaire to evaluate the disability status, and Mobile Phone Problematic Use Scale (MPPUS) was used to evaluate smartphone use frequency. The Visual Analogue Scale (VAS), 24-h Migraine Quality of Life Questionnaire (24-h MQoLQ), Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS) were used to evaluate the pain intensity, quality of life, sleep quality, and daytime sleepiness. Researchers found:
- The study included 123 patients.
- There was a significant difference between the groups in terms of pain intensity, frequency, and duration.
- There was a negative correlation between MPPUS and PQSI, a strong positive correlation between MPPUS and ESS, and a negative correlation between MPPUS and 24-h MQoLQ.
Demir YP, et al. Effects of smartphone overuse on headache, sleep and quality of life in migraine patients. Neurosciences (Riyadh). 2019;24(2):115-121. doi: 10.17712/nsj.2019.2.20180037.
Smartphone overuse in patients with migraine is related to poor sleep quality and daytime sleepiness, resulting in diminished quality of life, a new study found. The single-center, cross-sectional comparative study used the migraine disability assessment (MIDAS) questionnaire to evaluate the disability status, and Mobile Phone Problematic Use Scale (MPPUS) was used to evaluate smartphone use frequency. The Visual Analogue Scale (VAS), 24-h Migraine Quality of Life Questionnaire (24-h MQoLQ), Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS) were used to evaluate the pain intensity, quality of life, sleep quality, and daytime sleepiness. Researchers found:
- The study included 123 patients.
- There was a significant difference between the groups in terms of pain intensity, frequency, and duration.
- There was a negative correlation between MPPUS and PQSI, a strong positive correlation between MPPUS and ESS, and a negative correlation between MPPUS and 24-h MQoLQ.
Demir YP, et al. Effects of smartphone overuse on headache, sleep and quality of life in migraine patients. Neurosciences (Riyadh). 2019;24(2):115-121. doi: 10.17712/nsj.2019.2.20180037.
Smartphone overuse in patients with migraine is related to poor sleep quality and daytime sleepiness, resulting in diminished quality of life, a new study found. The single-center, cross-sectional comparative study used the migraine disability assessment (MIDAS) questionnaire to evaluate the disability status, and Mobile Phone Problematic Use Scale (MPPUS) was used to evaluate smartphone use frequency. The Visual Analogue Scale (VAS), 24-h Migraine Quality of Life Questionnaire (24-h MQoLQ), Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS) were used to evaluate the pain intensity, quality of life, sleep quality, and daytime sleepiness. Researchers found:
- The study included 123 patients.
- There was a significant difference between the groups in terms of pain intensity, frequency, and duration.
- There was a negative correlation between MPPUS and PQSI, a strong positive correlation between MPPUS and ESS, and a negative correlation between MPPUS and 24-h MQoLQ.
Demir YP, et al. Effects of smartphone overuse on headache, sleep and quality of life in migraine patients. Neurosciences (Riyadh). 2019;24(2):115-121. doi: 10.17712/nsj.2019.2.20180037.
VIDEO: Dr. Lihi Eder on the diagnostic challenges of psoriatic arthritis

How strong are the links between psoriasis and psoriatic arthritis? What are the biggest challenges that keep clinicians from diagnosing PsA? And which approaches show promise in helping prevent PsA? In this expert analysis, Lihi Eder, MD, PhD, of Women’s College Research Institute, Toronto, and the University of Toronto offers answers to these questions and more.

How strong are the links between psoriasis and psoriatic arthritis? What are the biggest challenges that keep clinicians from diagnosing PsA? And which approaches show promise in helping prevent PsA? In this expert analysis, Lihi Eder, MD, PhD, of Women’s College Research Institute, Toronto, and the University of Toronto offers answers to these questions and more.

How strong are the links between psoriasis and psoriatic arthritis? What are the biggest challenges that keep clinicians from diagnosing PsA? And which approaches show promise in helping prevent PsA? In this expert analysis, Lihi Eder, MD, PhD, of Women’s College Research Institute, Toronto, and the University of Toronto offers answers to these questions and more.
Insurance-related barriers impede L-glutamine access
FORT LAUDERDALE, FLA. – When the Food and Drug Administration in 2017 approved L-glutamine (Endari) to treat the symptoms of sickle cell disease (SCD), it was the first new drug indicated for the condition in nearly two decades. But a small study of sickle cell patients in New York has found that patients are having difficulty obtaining the drug and sticking to the regimen.
“We found out that there are multiple barriers, mostly insurance related, and that after 10 months only one-fifth of the patients were still actively taking this medication,” said Ugochi Ogu, MD, assistant director of the Sickle Cell Center for Adults at Montefiore Medical Center in New York. She presented preliminary study results at the annual meeting of the Foundation for Sickle Cell Disease Research.
L-glutamine oral powder is taken twice a day to treat the symptoms of SCD. GoodRx reports that the average cash price for a 60-day supply of L-glutamine is $2,773.
The study followed 101 patients prescribed L-glutamine at the Montefiore Medical Center. When they returned to the clinic, patients were asked about barriers to obtaining the medication and adherence to the twice-a-day dosing. The center used a nearby local specialty pharmacy to fill the prescriptions.
The study also evaluated adherence by calculating the mean possession ratio (MPR) utilizing pharmacy records. The average age of the patient population was 36 years, and 56% were women.
It’s the first study of L-glutamine barriers and adherence in SCD patients in the real-world setting, Dr. Ogu said.
At the end of the 10-month study period, 21% of the patients were actively taking the medication, she said. “Forty-three percent had discontinued the medication, and 33% never filled the prescriptions; 4% had received but never started Endari,” Dr. Ogu said.
Of the patients who never filled the prescriptions, Dr. Ogu reported that 27% said their insurer denied prior authorization, 19% said their deductible was too high, and 16% cited other insurance issues.
“So we can see that insurance alone accounted for over 60% of why patients did not receive or could not start the medication,” she said.
Most patients – 94% – either had Medicare or Medicaid; the remainder had private insurance.
Among the 43% of all study patients who stopped taking the medication, reasons given include poor adherence (47%), side effects (9%), pregnancy and breast feeding (5%), and no perceived benefit (5%), Dr. Ogu said. At the outset, pharmacy records estimated adherence at 74% by using the average MPR, a rate similar to the phase 3 trial adherence rate of 77.4%.
Patient education is important to eliminate these barriers to treatment for SCD, Dr. Ogu said. “The patients need to understand why they’re taking whatever medication you prescribe. We need to educate them about the side effects, and we need to make them understand why it’s important to take certain medications or how they’re going to help them,” she said.
But even more important, she added, is a systems-based method to deal with insurance barriers. “If 62% of the patients did not get the medication due to insurance issues, I don’t think we’re doing a good job of making it accessible to them.”
Dr. Ogu reported a financial relationship with Vertex.
SOURCE: Ogu U et al. FSCDR 2019, Abstract JSCDH-D-19-00041.
FORT LAUDERDALE, FLA. – When the Food and Drug Administration in 2017 approved L-glutamine (Endari) to treat the symptoms of sickle cell disease (SCD), it was the first new drug indicated for the condition in nearly two decades. But a small study of sickle cell patients in New York has found that patients are having difficulty obtaining the drug and sticking to the regimen.
“We found out that there are multiple barriers, mostly insurance related, and that after 10 months only one-fifth of the patients were still actively taking this medication,” said Ugochi Ogu, MD, assistant director of the Sickle Cell Center for Adults at Montefiore Medical Center in New York. She presented preliminary study results at the annual meeting of the Foundation for Sickle Cell Disease Research.
L-glutamine oral powder is taken twice a day to treat the symptoms of SCD. GoodRx reports that the average cash price for a 60-day supply of L-glutamine is $2,773.
The study followed 101 patients prescribed L-glutamine at the Montefiore Medical Center. When they returned to the clinic, patients were asked about barriers to obtaining the medication and adherence to the twice-a-day dosing. The center used a nearby local specialty pharmacy to fill the prescriptions.
The study also evaluated adherence by calculating the mean possession ratio (MPR) utilizing pharmacy records. The average age of the patient population was 36 years, and 56% were women.
It’s the first study of L-glutamine barriers and adherence in SCD patients in the real-world setting, Dr. Ogu said.
At the end of the 10-month study period, 21% of the patients were actively taking the medication, she said. “Forty-three percent had discontinued the medication, and 33% never filled the prescriptions; 4% had received but never started Endari,” Dr. Ogu said.
Of the patients who never filled the prescriptions, Dr. Ogu reported that 27% said their insurer denied prior authorization, 19% said their deductible was too high, and 16% cited other insurance issues.
“So we can see that insurance alone accounted for over 60% of why patients did not receive or could not start the medication,” she said.
Most patients – 94% – either had Medicare or Medicaid; the remainder had private insurance.
Among the 43% of all study patients who stopped taking the medication, reasons given include poor adherence (47%), side effects (9%), pregnancy and breast feeding (5%), and no perceived benefit (5%), Dr. Ogu said. At the outset, pharmacy records estimated adherence at 74% by using the average MPR, a rate similar to the phase 3 trial adherence rate of 77.4%.
Patient education is important to eliminate these barriers to treatment for SCD, Dr. Ogu said. “The patients need to understand why they’re taking whatever medication you prescribe. We need to educate them about the side effects, and we need to make them understand why it’s important to take certain medications or how they’re going to help them,” she said.
But even more important, she added, is a systems-based method to deal with insurance barriers. “If 62% of the patients did not get the medication due to insurance issues, I don’t think we’re doing a good job of making it accessible to them.”
Dr. Ogu reported a financial relationship with Vertex.
SOURCE: Ogu U et al. FSCDR 2019, Abstract JSCDH-D-19-00041.
FORT LAUDERDALE, FLA. – When the Food and Drug Administration in 2017 approved L-glutamine (Endari) to treat the symptoms of sickle cell disease (SCD), it was the first new drug indicated for the condition in nearly two decades. But a small study of sickle cell patients in New York has found that patients are having difficulty obtaining the drug and sticking to the regimen.
“We found out that there are multiple barriers, mostly insurance related, and that after 10 months only one-fifth of the patients were still actively taking this medication,” said Ugochi Ogu, MD, assistant director of the Sickle Cell Center for Adults at Montefiore Medical Center in New York. She presented preliminary study results at the annual meeting of the Foundation for Sickle Cell Disease Research.
L-glutamine oral powder is taken twice a day to treat the symptoms of SCD. GoodRx reports that the average cash price for a 60-day supply of L-glutamine is $2,773.
The study followed 101 patients prescribed L-glutamine at the Montefiore Medical Center. When they returned to the clinic, patients were asked about barriers to obtaining the medication and adherence to the twice-a-day dosing. The center used a nearby local specialty pharmacy to fill the prescriptions.
The study also evaluated adherence by calculating the mean possession ratio (MPR) utilizing pharmacy records. The average age of the patient population was 36 years, and 56% were women.
It’s the first study of L-glutamine barriers and adherence in SCD patients in the real-world setting, Dr. Ogu said.
At the end of the 10-month study period, 21% of the patients were actively taking the medication, she said. “Forty-three percent had discontinued the medication, and 33% never filled the prescriptions; 4% had received but never started Endari,” Dr. Ogu said.
Of the patients who never filled the prescriptions, Dr. Ogu reported that 27% said their insurer denied prior authorization, 19% said their deductible was too high, and 16% cited other insurance issues.
“So we can see that insurance alone accounted for over 60% of why patients did not receive or could not start the medication,” she said.
Most patients – 94% – either had Medicare or Medicaid; the remainder had private insurance.
Among the 43% of all study patients who stopped taking the medication, reasons given include poor adherence (47%), side effects (9%), pregnancy and breast feeding (5%), and no perceived benefit (5%), Dr. Ogu said. At the outset, pharmacy records estimated adherence at 74% by using the average MPR, a rate similar to the phase 3 trial adherence rate of 77.4%.
Patient education is important to eliminate these barriers to treatment for SCD, Dr. Ogu said. “The patients need to understand why they’re taking whatever medication you prescribe. We need to educate them about the side effects, and we need to make them understand why it’s important to take certain medications or how they’re going to help them,” she said.
But even more important, she added, is a systems-based method to deal with insurance barriers. “If 62% of the patients did not get the medication due to insurance issues, I don’t think we’re doing a good job of making it accessible to them.”
Dr. Ogu reported a financial relationship with Vertex.
SOURCE: Ogu U et al. FSCDR 2019, Abstract JSCDH-D-19-00041.
REPORTING FROM FSCDR 2019
Sarcoma—rare, but not insignificant
This year, progress in treating rare cancers has been named the advance of the year by the American Society of Clinical Oncology (ASCO). Advancements in treating desmoid tumors, a subtype of sarcoma, was highlighted as one of the prominent breakthroughs for a rare cancer. While sarcoma is statistically rare, the impact of the disease is great, particularly on patients and families. ASCO’s recognition of rare cancer advancements demonstrates what the sarcoma community has long known: that “rare” shouldn’t mean unimportant or overlooked. In fact, the contributions of families, patients, caregivers, clinicians, researchers, foundations, organizations, and agencies in bringing sarcoma to the forefront and giving it prominence—spending time, effort, and energy in finding effective treatments—is of utmost importance, despite the disease’s rarity.
The Sarcoma Foundation of America (SFA) is leading the race to cure sarcoma, and it is doing so through research, advocacy, and education. Since its founding in 2001, donors to the foundation have funded over $9 million in research, with almost $2 million to be invested in research projects this year alone. The SFA supports research focused on discovering and developing new and effective therapies to treat and eradicate sarcoma—often highrisk, high-reward projects that would not likely be funded by the government or commercial interests. Driving the research agenda are members of its Medical Advisory Board—some of the brightest scientific minds in the world today, several of whom also serve on the Editorial Advisory Board of this, the SFA’s official journal. We are thankful for their dedication. Together, their efforts will continue to make a difference in the lives of those impacted by sarcoma.
The Sarcoma Foundation of America
CureSarcoma.org
This year, progress in treating rare cancers has been named the advance of the year by the American Society of Clinical Oncology (ASCO). Advancements in treating desmoid tumors, a subtype of sarcoma, was highlighted as one of the prominent breakthroughs for a rare cancer. While sarcoma is statistically rare, the impact of the disease is great, particularly on patients and families. ASCO’s recognition of rare cancer advancements demonstrates what the sarcoma community has long known: that “rare” shouldn’t mean unimportant or overlooked. In fact, the contributions of families, patients, caregivers, clinicians, researchers, foundations, organizations, and agencies in bringing sarcoma to the forefront and giving it prominence—spending time, effort, and energy in finding effective treatments—is of utmost importance, despite the disease’s rarity.
The Sarcoma Foundation of America (SFA) is leading the race to cure sarcoma, and it is doing so through research, advocacy, and education. Since its founding in 2001, donors to the foundation have funded over $9 million in research, with almost $2 million to be invested in research projects this year alone. The SFA supports research focused on discovering and developing new and effective therapies to treat and eradicate sarcoma—often highrisk, high-reward projects that would not likely be funded by the government or commercial interests. Driving the research agenda are members of its Medical Advisory Board—some of the brightest scientific minds in the world today, several of whom also serve on the Editorial Advisory Board of this, the SFA’s official journal. We are thankful for their dedication. Together, their efforts will continue to make a difference in the lives of those impacted by sarcoma.
The Sarcoma Foundation of America
CureSarcoma.org
This year, progress in treating rare cancers has been named the advance of the year by the American Society of Clinical Oncology (ASCO). Advancements in treating desmoid tumors, a subtype of sarcoma, was highlighted as one of the prominent breakthroughs for a rare cancer. While sarcoma is statistically rare, the impact of the disease is great, particularly on patients and families. ASCO’s recognition of rare cancer advancements demonstrates what the sarcoma community has long known: that “rare” shouldn’t mean unimportant or overlooked. In fact, the contributions of families, patients, caregivers, clinicians, researchers, foundations, organizations, and agencies in bringing sarcoma to the forefront and giving it prominence—spending time, effort, and energy in finding effective treatments—is of utmost importance, despite the disease’s rarity.
The Sarcoma Foundation of America (SFA) is leading the race to cure sarcoma, and it is doing so through research, advocacy, and education. Since its founding in 2001, donors to the foundation have funded over $9 million in research, with almost $2 million to be invested in research projects this year alone. The SFA supports research focused on discovering and developing new and effective therapies to treat and eradicate sarcoma—often highrisk, high-reward projects that would not likely be funded by the government or commercial interests. Driving the research agenda are members of its Medical Advisory Board—some of the brightest scientific minds in the world today, several of whom also serve on the Editorial Advisory Board of this, the SFA’s official journal. We are thankful for their dedication. Together, their efforts will continue to make a difference in the lives of those impacted by sarcoma.
The Sarcoma Foundation of America
CureSarcoma.org