User login
USPSTF maintains ‘insufficient evidence’ for lipid disorder screenings in kids and teens
The group’s final recommendation and corresponding evidence report were published in the Journal of the American Medical Association, following a draft recommendation in January.
The organization reached a similar conclusion following its evaluation in 2016.
“There’s just not enough evidence to determine whether or not screening all children for high cholesterol improves their heart health into adulthood,” said Katrina Donahue, MD, MPH, a USPSTF member and a professor in the department of family medicine at the University of North Carolina at Chapel Hill. “We’re calling for additional research on the effectiveness of screening for and treatment of high cholesterol in children and adolescents to prevent heart attacks, strokes, and death in adulthood.”
The task force recommended other evidence-based strategies to promote heart health, such as screening for obesity and interventions to prevent tobacco use.
The recommendation was the result of a review of 43 studies from MEDLINE and the Cochrane Central Register of Controlled Trials through May 16, 2022. No randomized controlled trial directly addressed the effectiveness or harms of lipid screening for children and adolescents. The task force continued to use article alerts and targeted journal searches through March 24, 2023.
Conditions such as familial hypercholesterolemia and multifactorial dyslipidemia can cause abnormally high lipid levels in children, potentially leading to premature cardiovascular events such as myocardial infarction, stroke, and death in adulthood. According to the USPSTF, the prevalence of FH in U.S. children and adolescents ranges from 0.2% to 0.4% (one in every 250-500 youth). Multifactorial dyslipidemia is more common – the prevalence in children and adolescents ranges from 7.1% to 9.4%.
In an editorial response to the task force’s statement, the authors, including Sarah D. de Ferranti, MD, department of pediatrics at Harvard Medical School, Boston, question the impact of not screening children to identify FH and other conditions and caution against the subsequent delay in treatment.
“Treating FH during childhood slows the progression of vascular finding in atherosclerosis,” the authors write.
They note that the recommendation “leaves a void for clinicians seeking to provide care for patients today” while additional research is conducted.
Sarah Nosal, MD, a member of the board of directors of the American Academy of Family Physicians, said that despite the lack of a recommendation, primary care clinicians can still encourage proper nutrition and physical activity for patients.
Dr. Nosal said that even without clear recommendations from the USPSTF, in the rare case of a patient with a family history of FH, she would order a lipid test and discuss treatment plans with the patient and family, if needed.
“We really don’t want to do tests that we don’t know what to do with the information,” she said.
One USPSTF member reported receiving grants from Healthwise, a nonprofit organization, outside the submitted work.
A version of this article first appeared on Medscape.com.
The group’s final recommendation and corresponding evidence report were published in the Journal of the American Medical Association, following a draft recommendation in January.
The organization reached a similar conclusion following its evaluation in 2016.
“There’s just not enough evidence to determine whether or not screening all children for high cholesterol improves their heart health into adulthood,” said Katrina Donahue, MD, MPH, a USPSTF member and a professor in the department of family medicine at the University of North Carolina at Chapel Hill. “We’re calling for additional research on the effectiveness of screening for and treatment of high cholesterol in children and adolescents to prevent heart attacks, strokes, and death in adulthood.”
The task force recommended other evidence-based strategies to promote heart health, such as screening for obesity and interventions to prevent tobacco use.
The recommendation was the result of a review of 43 studies from MEDLINE and the Cochrane Central Register of Controlled Trials through May 16, 2022. No randomized controlled trial directly addressed the effectiveness or harms of lipid screening for children and adolescents. The task force continued to use article alerts and targeted journal searches through March 24, 2023.
Conditions such as familial hypercholesterolemia and multifactorial dyslipidemia can cause abnormally high lipid levels in children, potentially leading to premature cardiovascular events such as myocardial infarction, stroke, and death in adulthood. According to the USPSTF, the prevalence of FH in U.S. children and adolescents ranges from 0.2% to 0.4% (one in every 250-500 youth). Multifactorial dyslipidemia is more common – the prevalence in children and adolescents ranges from 7.1% to 9.4%.
In an editorial response to the task force’s statement, the authors, including Sarah D. de Ferranti, MD, department of pediatrics at Harvard Medical School, Boston, question the impact of not screening children to identify FH and other conditions and caution against the subsequent delay in treatment.
“Treating FH during childhood slows the progression of vascular finding in atherosclerosis,” the authors write.
They note that the recommendation “leaves a void for clinicians seeking to provide care for patients today” while additional research is conducted.
Sarah Nosal, MD, a member of the board of directors of the American Academy of Family Physicians, said that despite the lack of a recommendation, primary care clinicians can still encourage proper nutrition and physical activity for patients.
Dr. Nosal said that even without clear recommendations from the USPSTF, in the rare case of a patient with a family history of FH, she would order a lipid test and discuss treatment plans with the patient and family, if needed.
“We really don’t want to do tests that we don’t know what to do with the information,” she said.
One USPSTF member reported receiving grants from Healthwise, a nonprofit organization, outside the submitted work.
A version of this article first appeared on Medscape.com.
The group’s final recommendation and corresponding evidence report were published in the Journal of the American Medical Association, following a draft recommendation in January.
The organization reached a similar conclusion following its evaluation in 2016.
“There’s just not enough evidence to determine whether or not screening all children for high cholesterol improves their heart health into adulthood,” said Katrina Donahue, MD, MPH, a USPSTF member and a professor in the department of family medicine at the University of North Carolina at Chapel Hill. “We’re calling for additional research on the effectiveness of screening for and treatment of high cholesterol in children and adolescents to prevent heart attacks, strokes, and death in adulthood.”
The task force recommended other evidence-based strategies to promote heart health, such as screening for obesity and interventions to prevent tobacco use.
The recommendation was the result of a review of 43 studies from MEDLINE and the Cochrane Central Register of Controlled Trials through May 16, 2022. No randomized controlled trial directly addressed the effectiveness or harms of lipid screening for children and adolescents. The task force continued to use article alerts and targeted journal searches through March 24, 2023.
Conditions such as familial hypercholesterolemia and multifactorial dyslipidemia can cause abnormally high lipid levels in children, potentially leading to premature cardiovascular events such as myocardial infarction, stroke, and death in adulthood. According to the USPSTF, the prevalence of FH in U.S. children and adolescents ranges from 0.2% to 0.4% (one in every 250-500 youth). Multifactorial dyslipidemia is more common – the prevalence in children and adolescents ranges from 7.1% to 9.4%.
In an editorial response to the task force’s statement, the authors, including Sarah D. de Ferranti, MD, department of pediatrics at Harvard Medical School, Boston, question the impact of not screening children to identify FH and other conditions and caution against the subsequent delay in treatment.
“Treating FH during childhood slows the progression of vascular finding in atherosclerosis,” the authors write.
They note that the recommendation “leaves a void for clinicians seeking to provide care for patients today” while additional research is conducted.
Sarah Nosal, MD, a member of the board of directors of the American Academy of Family Physicians, said that despite the lack of a recommendation, primary care clinicians can still encourage proper nutrition and physical activity for patients.
Dr. Nosal said that even without clear recommendations from the USPSTF, in the rare case of a patient with a family history of FH, she would order a lipid test and discuss treatment plans with the patient and family, if needed.
“We really don’t want to do tests that we don’t know what to do with the information,” she said.
One USPSTF member reported receiving grants from Healthwise, a nonprofit organization, outside the submitted work.
A version of this article first appeared on Medscape.com.
A primer on gender-affirming care for transgender youth
Over the past few years, there has been rampant misinformation regarding gender-affirming care for transgender youth. In particular, there has been confusion regarding how care is administered, and what types of care are considered at various stages of development. This primer will help you understand the developmental approach to supporting transgender youth.
While people generally think of medical and surgical aspects of gender-affirming care, other domains can be just as important. For example, a 2020 publication in The Lancet Public Health found that access to gender-congruent government identification documents was associated with lower odds of severe psychological distress and suicidality.1 
Considerations for prepubertal children
The youngest developmental stage at which a young person may seek care regarding gender diversity is the prepubertal childhood stage. Guidelines set forth by The Endocrine Society and The World Professional Association for Transgender Health make it clear that no medical or surgical interventions are considered at this developmental stage.2,3 However, some young people may choose to pursue a “social transition.” Though this may sound like one thing, social transition can mean very different things for different people. It may include any combination of adopting a new name, pronouns, hairstyle, clothing, etc. Young people may also choose to pursue these various aspects of social transition in all settings, or sometimes only in some settings (for example, only at home if they don’t yet feel comfortable doing so at school). Research so far shows that prepubertal children who are allowed to socially transition have levels of anxiety and depression nearly indistinguishable from their cisgender peers.4 While some in the past have raised the question of whether a social transition increases a child’s degree of gender incongruence and thus their likelihood to “persist” in a transgender identity, research has suggested this is not the case, and that gender identity does not meaningfully differ before and after a social transition.5 It’s worth noting, that “desistance” of a young person’s transgender identity is generally not considered an ethical goal and that gender identity conversion efforts (that is, attempts to force transgender people to be cisgender) have been labeled unethical by the American Academy of Child & Adolescent Psychiatry.
Sadly, transgender children are victims of bullying at high rates in their schools and communities. Creating safe and affirming school and community environments can be some of the highest yield ways in which providers can support the mental health of gender-diverse youth at this stage. Gender Spectrum is an excellent nonprofit that provides resources to help families and communities with some of these nonmedical supports.
Early adolescence and pubertal suppression
The earliest gender-affirming medical intervention that may be considered is pubertal suppression. Pubertal suppression is achieved with gonadotropin-releasing hormone agonists. This class of medications is Food and Drug Administration approved in pediatrics for precocious puberty – a condition in which young people enter puberty much earlier than expected (sometimes as early as age 3). For that condition, the rationale is to delay puberty until the patient reaches a more developmentally normative age for puberty to begin. The rationale for pubertal suppression for adolescent gender dysphoria is somewhat similar – these medications allow for the temporary pausing of puberty, which can be particularly helpful for adolescents who are having severe negative psychological reactions to the ways in which their bodies are developing. The major advantage here is that pubertal suppression can be reversed (if the medication is stopped, endogenous puberty will proceed), whereas puberty itself cannot be easily reversed (resulting in adult transgender people needing surgery and other interventions later in life, if these changes can be fully undone at all). As with all medications, puberty blockers do carry known side effects, including falling behind on bone density (sex hormones are needed to mineralize bones). Because of this, it is generally recommended that adolescents have their bone density monitored during treatment, pursue avenues to improve bone health (for example, exercise), and either stop the puberty blocker to undergo endogenous puberty or start gender-affirming hormones (estrogen or testosterone) by around age 16.
It is also important to note that, under current guidelines, an adolescent must first undergo a comprehensive biopsychosocial mental health evaluation prior to starting pubertal suppression to ensure the clinical team has a comprehensive understanding of the adolescent’s mental health, that all potential gender supports that are needed are put into place, and that the adolescent and their guardians have a strong understanding of the medical intervention, its risks, side effects, and potential benefits. In addition, consent must be provided by parents or legal guardians, whereas adolescents themselves provide assent. Several studies have linked access to pubertal suppression, when indicated for gender dysphoria, to improved mental health outcomes (for example, van der Miesen and colleagues, Turban and colleagues, de Vries and colleagues, and Costa and colleagues).6-9
Later adolescence and gender-affirming hormones
Later in adolescence, transgender youth may be candidates for gender-affirming hormone treatment (for example, estrogen or testosterone) to induce pubertal changes that align with their gender identities. Once again, under current guidelines, a comprehensive mental health biopsychosocial evaluation must be conducted prior to initiation of these treatments. Part of this evaluation includes fertility counseling and consideration of fertility preservation (for example, oocyte or semen cryopreservation), given the potential for these medications to impact fertility. It also involves discussion of several of the physiologic changes from these medications that can be irreversible (for example, voice changes from testosterone are particularly difficult to reverse in the future). Tables of the physical changes from these medications, when they begin after starting, and when they generally reach their maximum are available in the Endocrine Society guidelines.2 The past endocrine society guidelines recommended not initiating gender-affirming hormones until age 16. The most recent guidelines note that there may be instances in which providers may consider starting them as early as age 13 (for example, to reduce risk of falling behind on bone density, or if a patient is having psychological distress related to their peers going through puberty while they are still in a prepubertal state). The latest World Professional Association for Transgender Health Standards of Care removed specific age cutoffs, highlighting the importance of a multidisciplinary team of mental health and hormone prescribing providers working together to understand the best course of action for a particular patient. As with pubertal suppression, several studies have linked access to gender-affirming hormones to improve mental health for adolescents with gender dysphoria (for example, Turban and colleagues, Chen and colleagues, de Vries and colleagues, Allen and colleagues, and Tordoff and colleagues).10-14
Gender-affirming surgeries
The vast majority of gender-affirming surgeries are not considered until adulthood. The most notable exception to this is masculinizing top surgery for trans masculine and nonbinary adolescents. As with all surgeries, this is a major decision, and requires agreement from a mental health provider, a medical provider, and the surgeon. Early research suggests such surgeries result in improved chest dysphoria and that regret rates appear to be low.15,16 While the latest World Professional Association for Transgender Health similarly removed strict age cutoffs for gender-affirming surgery, again noting the importance of individualized care, I suspect most will read this change in the context of the Endocrine Society guidelines and past WPATH guidelines that noted gender-affirming genital surgeries are not offered until adulthood (a rare exception perhaps being someone pursuing a gender-affirming vaginoplasty at say age 17 in the summer prior to college to avoid needing to take off from school for surgical recovery). Gender-affirming genital surgeries are generally much more involved surgeries with prolonged recovery times.
Given the substantial proportion of young people who openly identify as transgender,17 and the proliferation of misinformation, political rhetoric, and legislation that can impact gender-affirming care for adolescents with gender dysphoria,18 it is essential that providers have accurate, up-to-date information on what this care entails and how it is provided.
Dr. Turban is director of the gender psychiatry program at the University of California, San Francisco, where he is an assistant professor of child & adolescent psychiatry and affiliate faculty at the Philip R. Lee Institute for Health Policy Studies. He is on Twitter @jack_turban.
References
1. Malta M et al. Lancet Public Health. 2020 Apr;5(4):e178-9.
2. Hembree WC et al. J Clin Endocrinol Metab. 2017 Nov 1;102(11):3869-903.
3. Coleman E et al. Int J Transgend Health. 2022 Sep 6;23(Suppl 1):S1-259.
4. Durwood L et al. J Am Acad Child Adolesc Psychiatry. 2017 Feb;56(2):116-23.e2.
5. Rae JR et al. Psychol Sci. 2019 May;30(5):669-81.
6. van der Miesen AIR et al. J Adolesc Health. 2020 Jun;66(6):699-704.
7. Turban JL et al. Pediatrics. 2020 Feb;145(2):e20191725.
8. de Vries ALC et al. J Sex Med. 2011 Aug;8(8):2276-83.
9. Costa R et al. J Sex Med. 2015 Nov;12(11):2206-14.
10. Turban JL et al. PLoS One. 2022 Jan 12;17(1):e0261039.
11. Chen D et al. N Engl J Med. 2023;388:240-50.
12. de Vries ALC et al. Pediatrics. 2014 Oct;134(4):696-70.
13. Allen LR et al. Clin Pract Pediatr Psychol. 2019. doi: 10.1037/cpp0000288.
14. Tordoff DM et al. JAMA Netw Open. 2022 Feb 1;5(2):e220978.
15. Olson-Kennedy J et al. JAMA Pediatr. 2018;172(5):431-6.
16. Tang A et al. Ann Plast Surg. 2022 May;88(4 Suppl):S325-31
17. Johns MM et al. Morb Mortal Wkly Rep. 2019 Jan 25;68(3):67-71.
18. Turban JL et al. JAMA. 2021;325(22):2251-2.
Over the past few years, there has been rampant misinformation regarding gender-affirming care for transgender youth. In particular, there has been confusion regarding how care is administered, and what types of care are considered at various stages of development. This primer will help you understand the developmental approach to supporting transgender youth.
While people generally think of medical and surgical aspects of gender-affirming care, other domains can be just as important. For example, a 2020 publication in The Lancet Public Health found that access to gender-congruent government identification documents was associated with lower odds of severe psychological distress and suicidality.1
Considerations for prepubertal children
The youngest developmental stage at which a young person may seek care regarding gender diversity is the prepubertal childhood stage. Guidelines set forth by The Endocrine Society and The World Professional Association for Transgender Health make it clear that no medical or surgical interventions are considered at this developmental stage.2,3 However, some young people may choose to pursue a “social transition.” Though this may sound like one thing, social transition can mean very different things for different people. It may include any combination of adopting a new name, pronouns, hairstyle, clothing, etc. Young people may also choose to pursue these various aspects of social transition in all settings, or sometimes only in some settings (for example, only at home if they don’t yet feel comfortable doing so at school). Research so far shows that prepubertal children who are allowed to socially transition have levels of anxiety and depression nearly indistinguishable from their cisgender peers.4 While some in the past have raised the question of whether a social transition increases a child’s degree of gender incongruence and thus their likelihood to “persist” in a transgender identity, research has suggested this is not the case, and that gender identity does not meaningfully differ before and after a social transition.5 It’s worth noting, that “desistance” of a young person’s transgender identity is generally not considered an ethical goal and that gender identity conversion efforts (that is, attempts to force transgender people to be cisgender) have been labeled unethical by the American Academy of Child & Adolescent Psychiatry.
Sadly, transgender children are victims of bullying at high rates in their schools and communities. Creating safe and affirming school and community environments can be some of the highest yield ways in which providers can support the mental health of gender-diverse youth at this stage. Gender Spectrum is an excellent nonprofit that provides resources to help families and communities with some of these nonmedical supports.
Early adolescence and pubertal suppression
The earliest gender-affirming medical intervention that may be considered is pubertal suppression. Pubertal suppression is achieved with gonadotropin-releasing hormone agonists. This class of medications is Food and Drug Administration approved in pediatrics for precocious puberty – a condition in which young people enter puberty much earlier than expected (sometimes as early as age 3). For that condition, the rationale is to delay puberty until the patient reaches a more developmentally normative age for puberty to begin. The rationale for pubertal suppression for adolescent gender dysphoria is somewhat similar – these medications allow for the temporary pausing of puberty, which can be particularly helpful for adolescents who are having severe negative psychological reactions to the ways in which their bodies are developing. The major advantage here is that pubertal suppression can be reversed (if the medication is stopped, endogenous puberty will proceed), whereas puberty itself cannot be easily reversed (resulting in adult transgender people needing surgery and other interventions later in life, if these changes can be fully undone at all). As with all medications, puberty blockers do carry known side effects, including falling behind on bone density (sex hormones are needed to mineralize bones). Because of this, it is generally recommended that adolescents have their bone density monitored during treatment, pursue avenues to improve bone health (for example, exercise), and either stop the puberty blocker to undergo endogenous puberty or start gender-affirming hormones (estrogen or testosterone) by around age 16.
It is also important to note that, under current guidelines, an adolescent must first undergo a comprehensive biopsychosocial mental health evaluation prior to starting pubertal suppression to ensure the clinical team has a comprehensive understanding of the adolescent’s mental health, that all potential gender supports that are needed are put into place, and that the adolescent and their guardians have a strong understanding of the medical intervention, its risks, side effects, and potential benefits. In addition, consent must be provided by parents or legal guardians, whereas adolescents themselves provide assent. Several studies have linked access to pubertal suppression, when indicated for gender dysphoria, to improved mental health outcomes (for example, van der Miesen and colleagues, Turban and colleagues, de Vries and colleagues, and Costa and colleagues).6-9
Later adolescence and gender-affirming hormones
Later in adolescence, transgender youth may be candidates for gender-affirming hormone treatment (for example, estrogen or testosterone) to induce pubertal changes that align with their gender identities. Once again, under current guidelines, a comprehensive mental health biopsychosocial evaluation must be conducted prior to initiation of these treatments. Part of this evaluation includes fertility counseling and consideration of fertility preservation (for example, oocyte or semen cryopreservation), given the potential for these medications to impact fertility. It also involves discussion of several of the physiologic changes from these medications that can be irreversible (for example, voice changes from testosterone are particularly difficult to reverse in the future). Tables of the physical changes from these medications, when they begin after starting, and when they generally reach their maximum are available in the Endocrine Society guidelines.2 The past endocrine society guidelines recommended not initiating gender-affirming hormones until age 16. The most recent guidelines note that there may be instances in which providers may consider starting them as early as age 13 (for example, to reduce risk of falling behind on bone density, or if a patient is having psychological distress related to their peers going through puberty while they are still in a prepubertal state). The latest World Professional Association for Transgender Health Standards of Care removed specific age cutoffs, highlighting the importance of a multidisciplinary team of mental health and hormone prescribing providers working together to understand the best course of action for a particular patient. As with pubertal suppression, several studies have linked access to gender-affirming hormones to improve mental health for adolescents with gender dysphoria (for example, Turban and colleagues, Chen and colleagues, de Vries and colleagues, Allen and colleagues, and Tordoff and colleagues).10-14
Gender-affirming surgeries
The vast majority of gender-affirming surgeries are not considered until adulthood. The most notable exception to this is masculinizing top surgery for trans masculine and nonbinary adolescents. As with all surgeries, this is a major decision, and requires agreement from a mental health provider, a medical provider, and the surgeon. Early research suggests such surgeries result in improved chest dysphoria and that regret rates appear to be low.15,16 While the latest World Professional Association for Transgender Health similarly removed strict age cutoffs for gender-affirming surgery, again noting the importance of individualized care, I suspect most will read this change in the context of the Endocrine Society guidelines and past WPATH guidelines that noted gender-affirming genital surgeries are not offered until adulthood (a rare exception perhaps being someone pursuing a gender-affirming vaginoplasty at say age 17 in the summer prior to college to avoid needing to take off from school for surgical recovery). Gender-affirming genital surgeries are generally much more involved surgeries with prolonged recovery times.
Given the substantial proportion of young people who openly identify as transgender,17 and the proliferation of misinformation, political rhetoric, and legislation that can impact gender-affirming care for adolescents with gender dysphoria,18 it is essential that providers have accurate, up-to-date information on what this care entails and how it is provided.
Dr. Turban is director of the gender psychiatry program at the University of California, San Francisco, where he is an assistant professor of child & adolescent psychiatry and affiliate faculty at the Philip R. Lee Institute for Health Policy Studies. He is on Twitter @jack_turban.
References
1. Malta M et al. Lancet Public Health. 2020 Apr;5(4):e178-9.
2. Hembree WC et al. J Clin Endocrinol Metab. 2017 Nov 1;102(11):3869-903.
3. Coleman E et al. Int J Transgend Health. 2022 Sep 6;23(Suppl 1):S1-259.
4. Durwood L et al. J Am Acad Child Adolesc Psychiatry. 2017 Feb;56(2):116-23.e2.
5. Rae JR et al. Psychol Sci. 2019 May;30(5):669-81.
6. van der Miesen AIR et al. J Adolesc Health. 2020 Jun;66(6):699-704.
7. Turban JL et al. Pediatrics. 2020 Feb;145(2):e20191725.
8. de Vries ALC et al. J Sex Med. 2011 Aug;8(8):2276-83.
9. Costa R et al. J Sex Med. 2015 Nov;12(11):2206-14.
10. Turban JL et al. PLoS One. 2022 Jan 12;17(1):e0261039.
11. Chen D et al. N Engl J Med. 2023;388:240-50.
12. de Vries ALC et al. Pediatrics. 2014 Oct;134(4):696-70.
13. Allen LR et al. Clin Pract Pediatr Psychol. 2019. doi: 10.1037/cpp0000288.
14. Tordoff DM et al. JAMA Netw Open. 2022 Feb 1;5(2):e220978.
15. Olson-Kennedy J et al. JAMA Pediatr. 2018;172(5):431-6.
16. Tang A et al. Ann Plast Surg. 2022 May;88(4 Suppl):S325-31
17. Johns MM et al. Morb Mortal Wkly Rep. 2019 Jan 25;68(3):67-71.
18. Turban JL et al. JAMA. 2021;325(22):2251-2.
Over the past few years, there has been rampant misinformation regarding gender-affirming care for transgender youth. In particular, there has been confusion regarding how care is administered, and what types of care are considered at various stages of development. This primer will help you understand the developmental approach to supporting transgender youth.
While people generally think of medical and surgical aspects of gender-affirming care, other domains can be just as important. For example, a 2020 publication in The Lancet Public Health found that access to gender-congruent government identification documents was associated with lower odds of severe psychological distress and suicidality.1
Considerations for prepubertal children
The youngest developmental stage at which a young person may seek care regarding gender diversity is the prepubertal childhood stage. Guidelines set forth by The Endocrine Society and The World Professional Association for Transgender Health make it clear that no medical or surgical interventions are considered at this developmental stage.2,3 However, some young people may choose to pursue a “social transition.” Though this may sound like one thing, social transition can mean very different things for different people. It may include any combination of adopting a new name, pronouns, hairstyle, clothing, etc. Young people may also choose to pursue these various aspects of social transition in all settings, or sometimes only in some settings (for example, only at home if they don’t yet feel comfortable doing so at school). Research so far shows that prepubertal children who are allowed to socially transition have levels of anxiety and depression nearly indistinguishable from their cisgender peers.4 While some in the past have raised the question of whether a social transition increases a child’s degree of gender incongruence and thus their likelihood to “persist” in a transgender identity, research has suggested this is not the case, and that gender identity does not meaningfully differ before and after a social transition.5 It’s worth noting, that “desistance” of a young person’s transgender identity is generally not considered an ethical goal and that gender identity conversion efforts (that is, attempts to force transgender people to be cisgender) have been labeled unethical by the American Academy of Child & Adolescent Psychiatry.
Sadly, transgender children are victims of bullying at high rates in their schools and communities. Creating safe and affirming school and community environments can be some of the highest yield ways in which providers can support the mental health of gender-diverse youth at this stage. Gender Spectrum is an excellent nonprofit that provides resources to help families and communities with some of these nonmedical supports.
Early adolescence and pubertal suppression
The earliest gender-affirming medical intervention that may be considered is pubertal suppression. Pubertal suppression is achieved with gonadotropin-releasing hormone agonists. This class of medications is Food and Drug Administration approved in pediatrics for precocious puberty – a condition in which young people enter puberty much earlier than expected (sometimes as early as age 3). For that condition, the rationale is to delay puberty until the patient reaches a more developmentally normative age for puberty to begin. The rationale for pubertal suppression for adolescent gender dysphoria is somewhat similar – these medications allow for the temporary pausing of puberty, which can be particularly helpful for adolescents who are having severe negative psychological reactions to the ways in which their bodies are developing. The major advantage here is that pubertal suppression can be reversed (if the medication is stopped, endogenous puberty will proceed), whereas puberty itself cannot be easily reversed (resulting in adult transgender people needing surgery and other interventions later in life, if these changes can be fully undone at all). As with all medications, puberty blockers do carry known side effects, including falling behind on bone density (sex hormones are needed to mineralize bones). Because of this, it is generally recommended that adolescents have their bone density monitored during treatment, pursue avenues to improve bone health (for example, exercise), and either stop the puberty blocker to undergo endogenous puberty or start gender-affirming hormones (estrogen or testosterone) by around age 16.
It is also important to note that, under current guidelines, an adolescent must first undergo a comprehensive biopsychosocial mental health evaluation prior to starting pubertal suppression to ensure the clinical team has a comprehensive understanding of the adolescent’s mental health, that all potential gender supports that are needed are put into place, and that the adolescent and their guardians have a strong understanding of the medical intervention, its risks, side effects, and potential benefits. In addition, consent must be provided by parents or legal guardians, whereas adolescents themselves provide assent. Several studies have linked access to pubertal suppression, when indicated for gender dysphoria, to improved mental health outcomes (for example, van der Miesen and colleagues, Turban and colleagues, de Vries and colleagues, and Costa and colleagues).6-9
Later adolescence and gender-affirming hormones
Later in adolescence, transgender youth may be candidates for gender-affirming hormone treatment (for example, estrogen or testosterone) to induce pubertal changes that align with their gender identities. Once again, under current guidelines, a comprehensive mental health biopsychosocial evaluation must be conducted prior to initiation of these treatments. Part of this evaluation includes fertility counseling and consideration of fertility preservation (for example, oocyte or semen cryopreservation), given the potential for these medications to impact fertility. It also involves discussion of several of the physiologic changes from these medications that can be irreversible (for example, voice changes from testosterone are particularly difficult to reverse in the future). Tables of the physical changes from these medications, when they begin after starting, and when they generally reach their maximum are available in the Endocrine Society guidelines.2 The past endocrine society guidelines recommended not initiating gender-affirming hormones until age 16. The most recent guidelines note that there may be instances in which providers may consider starting them as early as age 13 (for example, to reduce risk of falling behind on bone density, or if a patient is having psychological distress related to their peers going through puberty while they are still in a prepubertal state). The latest World Professional Association for Transgender Health Standards of Care removed specific age cutoffs, highlighting the importance of a multidisciplinary team of mental health and hormone prescribing providers working together to understand the best course of action for a particular patient. As with pubertal suppression, several studies have linked access to gender-affirming hormones to improve mental health for adolescents with gender dysphoria (for example, Turban and colleagues, Chen and colleagues, de Vries and colleagues, Allen and colleagues, and Tordoff and colleagues).10-14
Gender-affirming surgeries
The vast majority of gender-affirming surgeries are not considered until adulthood. The most notable exception to this is masculinizing top surgery for trans masculine and nonbinary adolescents. As with all surgeries, this is a major decision, and requires agreement from a mental health provider, a medical provider, and the surgeon. Early research suggests such surgeries result in improved chest dysphoria and that regret rates appear to be low.15,16 While the latest World Professional Association for Transgender Health similarly removed strict age cutoffs for gender-affirming surgery, again noting the importance of individualized care, I suspect most will read this change in the context of the Endocrine Society guidelines and past WPATH guidelines that noted gender-affirming genital surgeries are not offered until adulthood (a rare exception perhaps being someone pursuing a gender-affirming vaginoplasty at say age 17 in the summer prior to college to avoid needing to take off from school for surgical recovery). Gender-affirming genital surgeries are generally much more involved surgeries with prolonged recovery times.
Given the substantial proportion of young people who openly identify as transgender,17 and the proliferation of misinformation, political rhetoric, and legislation that can impact gender-affirming care for adolescents with gender dysphoria,18 it is essential that providers have accurate, up-to-date information on what this care entails and how it is provided.
Dr. Turban is director of the gender psychiatry program at the University of California, San Francisco, where he is an assistant professor of child & adolescent psychiatry and affiliate faculty at the Philip R. Lee Institute for Health Policy Studies. He is on Twitter @jack_turban.
References
1. Malta M et al. Lancet Public Health. 2020 Apr;5(4):e178-9.
2. Hembree WC et al. J Clin Endocrinol Metab. 2017 Nov 1;102(11):3869-903.
3. Coleman E et al. Int J Transgend Health. 2022 Sep 6;23(Suppl 1):S1-259.
4. Durwood L et al. J Am Acad Child Adolesc Psychiatry. 2017 Feb;56(2):116-23.e2.
5. Rae JR et al. Psychol Sci. 2019 May;30(5):669-81.
6. van der Miesen AIR et al. J Adolesc Health. 2020 Jun;66(6):699-704.
7. Turban JL et al. Pediatrics. 2020 Feb;145(2):e20191725.
8. de Vries ALC et al. J Sex Med. 2011 Aug;8(8):2276-83.
9. Costa R et al. J Sex Med. 2015 Nov;12(11):2206-14.
10. Turban JL et al. PLoS One. 2022 Jan 12;17(1):e0261039.
11. Chen D et al. N Engl J Med. 2023;388:240-50.
12. de Vries ALC et al. Pediatrics. 2014 Oct;134(4):696-70.
13. Allen LR et al. Clin Pract Pediatr Psychol. 2019. doi: 10.1037/cpp0000288.
14. Tordoff DM et al. JAMA Netw Open. 2022 Feb 1;5(2):e220978.
15. Olson-Kennedy J et al. JAMA Pediatr. 2018;172(5):431-6.
16. Tang A et al. Ann Plast Surg. 2022 May;88(4 Suppl):S325-31
17. Johns MM et al. Morb Mortal Wkly Rep. 2019 Jan 25;68(3):67-71.
18. Turban JL et al. JAMA. 2021;325(22):2251-2.
Camp Discovery: A place for children to be comfortable in their own skin
The talent show, the grand finale of the 1-week camp, was nearly 7 years ago, but Emily Haygood of Houston, now 17 and about to start her senior year, remembers it in detail. She sang “Death of a Bachelor,” an R&B pop song and Billboard No. 1 hit at the time about a former bachelor who had happily married. These days, she said, if she watched the video of her 10-year-old singing self, “I would probably throw up.” But she still treasures the audience response, “having all those people I’d gotten close to cheer for me.”
Emily was at , but share one feature: they are the kind of dermatologic issues that can make doing everyday kid or teen activities like swimming difficult and can elicit mean comments from classmates and other would-be friends.
Emily was first diagnosed with atopic dermatitis at age 4, her mother, Amber Haygood, says. By age 9, it had become severe. Emily remembers being teased some in elementary school. “I did feel bad a lot of the time, when asked insensitive questions.” Her mother still bristles that adults often could be cruel, too.
But at Camp Discovery, those issues were nonexistent. “Camp was so cool,” Emily said. Besides the usual camp activities, it had things that “normal” camp didn’t, like other kids who didn’t stare at your skin condition or make fun of it.
30th anniversary season begins
This year is the 30th anniversary of Camp Discovery. Sessions began July 23 and continue through Aug. 18, with locations in Crosslake, Minn.; Hebron, Conn.; and Millville, Pa., in addition to Burton, Tex. About 300 campers will attend this year, according to the AAD, and 6,151 campers have attended from 1993 to 2022.
The 1-week camp accepts youth with conditions ranging from eczema and psoriasis to vitiligo, alopecia, epidermolysis bullosa, and ichthyosis, according to the academy. A dermatologist first refers a child, downloading and completing the referral form and sending it to the academy.
The 1-week session, including travel, is free for the campers, thanks to donors. As a nonprofit and membership-based organization, the AAD does not release the detailed financial information about the operating budget for the camp. Dermatologists, nurses, and counselors volunteer their time.
In his presidential address at the AAD’s annual meeting in March, outgoing president Mark D. Kaufmann, MD, of the department of dermatology at the Icahn School of Medicine at Mount Sinai in New York, referred to camp volunteering as an antidote to professional burnout. Remembering why as a dermatologist one entered the profession can be one solution, he said, and described his own recent 3-day volunteer stint at the camp.
“Those 3 magical days, being with kids as they discovered they weren’t alone in the world, sharing their experiences and ideas, reminded me why I became a physician in the first place,” he told the audience of meeting attendees. He vowed to expand the program, with a goal of having every dermatology resident attend Camp Discovery.
Mental health effects of skin conditions
Much research has focused on the mental health fallout from living with chronic skin conditions, and even young children can be adversely affected. In one review of the literature, researchers concluded that pediatric skin disease, including acne, atopic dermatitis, and psoriasis, can affect quality of life, carry stigma, and lead to bullying and eventually even suicidal behavior. Another study, published earlier this year, found that atopic dermatitis affected children’s quality of life, impacting sleep and leading to feelings of being ashamed.
“It’s not necessarily about what their skin condition is and more about the psychosocial impact,’’ said Samantha Hill, MD, a pediatric and general dermatologist in Lynchburg, Va., who is the medical director of Camp Discovery in Minnesota this year.
Camp activities, reactions
The overriding theme of camp is allowing all the youth to be “just one of the kids at camp,” Dr. Hill said in an interview. “They come to do all kinds of things they don’t do in normal life because people don’t give them the credit to [be able to] do it.”
Every year, she said, “I tell my staff we are in the business of making things happen, so if there is a kid bandaged head to toe [because of a skin condition] and they want to go tubing and get in the lake, we figure out how to make it happen. We have done that multiple times.”
Newcomers are initially nervous, Dr. Hill acknowledged, but in time let their guard down. Returnees are a different story. “When kids who have been at camp before arrive, you can see them start breathing again, looking for their friends. You can see them relax right before your eyes.”
“The single most empowering thing is the realization you are not alone,” said Meena Julapalli, MD, a Houston dermatologist who is a medical team member and long-time volunteer at Camp Discovery. That, she said, and “You get to be a kid, and you don’t have to have people staring at you.”
Dr. Julapalli remembers one of her patients with keratitis-ichthyosis-deafness (KID) syndrome. “She needed more than what I could offer,” she said. “She needed camp.” At camp, the organizers found a counselor who knew sign language to accompany her. At first, she was quiet and didn’t smile much. By the end of the week, as she was about to observe her birthday, things changed. After breakfast, she was led to the stage, where fellow campers began singing – and signing the song they had just learned.
Camp staff gets it
Allyson Garin, who was diagnosed with vitiligo at age 6 months, is a camp program director at Camp Discovery in Crosslake, Minn. She first went to camp in 1990 at age 11, returning until she “aged out” at 16, then worked as a counselor. She gets it when campers tell her they hear rude comments about their skin conditions.
“I remember being in swimming pools, in lines at fairgrounds or amusement parks,” she said in an interview, “and hearing people say, ‘Don’t touch her,’ ’’ fearing contagion, perhaps. “People would make jokes about cows, since they are spotted,” she said, or people would simply step back.
All those years ago, her mother found out about the camp and decided to figure out how to get her there. She got there, and she met a fellow camper with vitiligo, and they became pen pals. “We still talk,” she said.
Meeting someone with the same skin condition, she said, isn’t just about commiserating. “There is a lot of information sharing,” on topics such as best treatments, strategies, and other conversations.
Other lessons
While campers can feel comfortable around others who also have skin conditions, and understand, the lesson extends beyond that, Ms. Garin said. “It gave me a perspective,” she said of her camp experience. “I always felt, ‘Woe is me.’ ” But when she met others with, as she said, conditions “way worse than vitiligo, it really grounds you.”
Dr. Hill agreed. Campers get the benefit of others accepting and including them, but also practicing that same attitude toward fellow campers, she said. “It insures that we are providing this environment of inclusion, but that they are practicing it as well. They need to practice it like everyone else.”
Getting parents on board
The idea of camp, especially for those at the younger end of the 8- to 16-years age range accepted for Camp Discovery, can take some getting used to for some parents. Ms. Haygood, Emily’s mother, relates to that. Her daughter’s dermatologist at the time, who is now retired, had first suggested the camp. Her first reaction? “I am not sending my chronically ill child to camp with strangers.” She also acknowledged that she, like other parents of children with a chronic illness, can be a helicopter parent.
Then, she noticed that Emily seemed interested, so she got more information, finding out that it was staffed by doctors. It all sounded good, she said, and the social interaction, she knew, would be beneficial. “Then my husband was a no,” she said, concerned about their daughter being with strangers. “Eventually he came around,” Ms. Haygood said. All along, Emily said, “it seemed fun. I was probably trying to talk them into it.” She admits she was very nervous at first, but calmed down when she realized her own dermatologist was going to be there.
Vanessa Hadley of Spring, Tex., was on board the moment she heard about Camp Discovery. “I just thought it was amazing,” she said. Her daughter Isabelle, 13, has been to the camp. “She has alopecia areata and severe eczema,” Ms. Hadley said. Now, Isabelle is returning to camp and coaching her sister Penelope, 8, who has eczema and mild alopecia and is a first-timer this summer.
One tip the 8-year-old has learned so far: Turn to your counselor for support if you’re nervous. That worked, Isabelle said, the first year when she was wary of the zipline – then surprised herself and conquered it.
Dr. Hill and Dr. Julapalli have no disclosures.
The talent show, the grand finale of the 1-week camp, was nearly 7 years ago, but Emily Haygood of Houston, now 17 and about to start her senior year, remembers it in detail. She sang “Death of a Bachelor,” an R&B pop song and Billboard No. 1 hit at the time about a former bachelor who had happily married. These days, she said, if she watched the video of her 10-year-old singing self, “I would probably throw up.” But she still treasures the audience response, “having all those people I’d gotten close to cheer for me.”
Emily was at , but share one feature: they are the kind of dermatologic issues that can make doing everyday kid or teen activities like swimming difficult and can elicit mean comments from classmates and other would-be friends.
Emily was first diagnosed with atopic dermatitis at age 4, her mother, Amber Haygood, says. By age 9, it had become severe. Emily remembers being teased some in elementary school. “I did feel bad a lot of the time, when asked insensitive questions.” Her mother still bristles that adults often could be cruel, too.
But at Camp Discovery, those issues were nonexistent. “Camp was so cool,” Emily said. Besides the usual camp activities, it had things that “normal” camp didn’t, like other kids who didn’t stare at your skin condition or make fun of it.
30th anniversary season begins
This year is the 30th anniversary of Camp Discovery. Sessions began July 23 and continue through Aug. 18, with locations in Crosslake, Minn.; Hebron, Conn.; and Millville, Pa., in addition to Burton, Tex. About 300 campers will attend this year, according to the AAD, and 6,151 campers have attended from 1993 to 2022.
The 1-week camp accepts youth with conditions ranging from eczema and psoriasis to vitiligo, alopecia, epidermolysis bullosa, and ichthyosis, according to the academy. A dermatologist first refers a child, downloading and completing the referral form and sending it to the academy.
The 1-week session, including travel, is free for the campers, thanks to donors. As a nonprofit and membership-based organization, the AAD does not release the detailed financial information about the operating budget for the camp. Dermatologists, nurses, and counselors volunteer their time.
In his presidential address at the AAD’s annual meeting in March, outgoing president Mark D. Kaufmann, MD, of the department of dermatology at the Icahn School of Medicine at Mount Sinai in New York, referred to camp volunteering as an antidote to professional burnout. Remembering why as a dermatologist one entered the profession can be one solution, he said, and described his own recent 3-day volunteer stint at the camp.
“Those 3 magical days, being with kids as they discovered they weren’t alone in the world, sharing their experiences and ideas, reminded me why I became a physician in the first place,” he told the audience of meeting attendees. He vowed to expand the program, with a goal of having every dermatology resident attend Camp Discovery.
Mental health effects of skin conditions
Much research has focused on the mental health fallout from living with chronic skin conditions, and even young children can be adversely affected. In one review of the literature, researchers concluded that pediatric skin disease, including acne, atopic dermatitis, and psoriasis, can affect quality of life, carry stigma, and lead to bullying and eventually even suicidal behavior. Another study, published earlier this year, found that atopic dermatitis affected children’s quality of life, impacting sleep and leading to feelings of being ashamed.
“It’s not necessarily about what their skin condition is and more about the psychosocial impact,’’ said Samantha Hill, MD, a pediatric and general dermatologist in Lynchburg, Va., who is the medical director of Camp Discovery in Minnesota this year.
Camp activities, reactions
The overriding theme of camp is allowing all the youth to be “just one of the kids at camp,” Dr. Hill said in an interview. “They come to do all kinds of things they don’t do in normal life because people don’t give them the credit to [be able to] do it.”
Every year, she said, “I tell my staff we are in the business of making things happen, so if there is a kid bandaged head to toe [because of a skin condition] and they want to go tubing and get in the lake, we figure out how to make it happen. We have done that multiple times.”
Newcomers are initially nervous, Dr. Hill acknowledged, but in time let their guard down. Returnees are a different story. “When kids who have been at camp before arrive, you can see them start breathing again, looking for their friends. You can see them relax right before your eyes.”
“The single most empowering thing is the realization you are not alone,” said Meena Julapalli, MD, a Houston dermatologist who is a medical team member and long-time volunteer at Camp Discovery. That, she said, and “You get to be a kid, and you don’t have to have people staring at you.”
Dr. Julapalli remembers one of her patients with keratitis-ichthyosis-deafness (KID) syndrome. “She needed more than what I could offer,” she said. “She needed camp.” At camp, the organizers found a counselor who knew sign language to accompany her. At first, she was quiet and didn’t smile much. By the end of the week, as she was about to observe her birthday, things changed. After breakfast, she was led to the stage, where fellow campers began singing – and signing the song they had just learned.
Camp staff gets it
Allyson Garin, who was diagnosed with vitiligo at age 6 months, is a camp program director at Camp Discovery in Crosslake, Minn. She first went to camp in 1990 at age 11, returning until she “aged out” at 16, then worked as a counselor. She gets it when campers tell her they hear rude comments about their skin conditions.
“I remember being in swimming pools, in lines at fairgrounds or amusement parks,” she said in an interview, “and hearing people say, ‘Don’t touch her,’ ’’ fearing contagion, perhaps. “People would make jokes about cows, since they are spotted,” she said, or people would simply step back.
All those years ago, her mother found out about the camp and decided to figure out how to get her there. She got there, and she met a fellow camper with vitiligo, and they became pen pals. “We still talk,” she said.
Meeting someone with the same skin condition, she said, isn’t just about commiserating. “There is a lot of information sharing,” on topics such as best treatments, strategies, and other conversations.
Other lessons
While campers can feel comfortable around others who also have skin conditions, and understand, the lesson extends beyond that, Ms. Garin said. “It gave me a perspective,” she said of her camp experience. “I always felt, ‘Woe is me.’ ” But when she met others with, as she said, conditions “way worse than vitiligo, it really grounds you.”
Dr. Hill agreed. Campers get the benefit of others accepting and including them, but also practicing that same attitude toward fellow campers, she said. “It insures that we are providing this environment of inclusion, but that they are practicing it as well. They need to practice it like everyone else.”
Getting parents on board
The idea of camp, especially for those at the younger end of the 8- to 16-years age range accepted for Camp Discovery, can take some getting used to for some parents. Ms. Haygood, Emily’s mother, relates to that. Her daughter’s dermatologist at the time, who is now retired, had first suggested the camp. Her first reaction? “I am not sending my chronically ill child to camp with strangers.” She also acknowledged that she, like other parents of children with a chronic illness, can be a helicopter parent.
Then, she noticed that Emily seemed interested, so she got more information, finding out that it was staffed by doctors. It all sounded good, she said, and the social interaction, she knew, would be beneficial. “Then my husband was a no,” she said, concerned about their daughter being with strangers. “Eventually he came around,” Ms. Haygood said. All along, Emily said, “it seemed fun. I was probably trying to talk them into it.” She admits she was very nervous at first, but calmed down when she realized her own dermatologist was going to be there.
Vanessa Hadley of Spring, Tex., was on board the moment she heard about Camp Discovery. “I just thought it was amazing,” she said. Her daughter Isabelle, 13, has been to the camp. “She has alopecia areata and severe eczema,” Ms. Hadley said. Now, Isabelle is returning to camp and coaching her sister Penelope, 8, who has eczema and mild alopecia and is a first-timer this summer.
One tip the 8-year-old has learned so far: Turn to your counselor for support if you’re nervous. That worked, Isabelle said, the first year when she was wary of the zipline – then surprised herself and conquered it.
Dr. Hill and Dr. Julapalli have no disclosures.
The talent show, the grand finale of the 1-week camp, was nearly 7 years ago, but Emily Haygood of Houston, now 17 and about to start her senior year, remembers it in detail. She sang “Death of a Bachelor,” an R&B pop song and Billboard No. 1 hit at the time about a former bachelor who had happily married. These days, she said, if she watched the video of her 10-year-old singing self, “I would probably throw up.” But she still treasures the audience response, “having all those people I’d gotten close to cheer for me.”
Emily was at , but share one feature: they are the kind of dermatologic issues that can make doing everyday kid or teen activities like swimming difficult and can elicit mean comments from classmates and other would-be friends.
Emily was first diagnosed with atopic dermatitis at age 4, her mother, Amber Haygood, says. By age 9, it had become severe. Emily remembers being teased some in elementary school. “I did feel bad a lot of the time, when asked insensitive questions.” Her mother still bristles that adults often could be cruel, too.
But at Camp Discovery, those issues were nonexistent. “Camp was so cool,” Emily said. Besides the usual camp activities, it had things that “normal” camp didn’t, like other kids who didn’t stare at your skin condition or make fun of it.
30th anniversary season begins
This year is the 30th anniversary of Camp Discovery. Sessions began July 23 and continue through Aug. 18, with locations in Crosslake, Minn.; Hebron, Conn.; and Millville, Pa., in addition to Burton, Tex. About 300 campers will attend this year, according to the AAD, and 6,151 campers have attended from 1993 to 2022.
The 1-week camp accepts youth with conditions ranging from eczema and psoriasis to vitiligo, alopecia, epidermolysis bullosa, and ichthyosis, according to the academy. A dermatologist first refers a child, downloading and completing the referral form and sending it to the academy.
The 1-week session, including travel, is free for the campers, thanks to donors. As a nonprofit and membership-based organization, the AAD does not release the detailed financial information about the operating budget for the camp. Dermatologists, nurses, and counselors volunteer their time.
In his presidential address at the AAD’s annual meeting in March, outgoing president Mark D. Kaufmann, MD, of the department of dermatology at the Icahn School of Medicine at Mount Sinai in New York, referred to camp volunteering as an antidote to professional burnout. Remembering why as a dermatologist one entered the profession can be one solution, he said, and described his own recent 3-day volunteer stint at the camp.
“Those 3 magical days, being with kids as they discovered they weren’t alone in the world, sharing their experiences and ideas, reminded me why I became a physician in the first place,” he told the audience of meeting attendees. He vowed to expand the program, with a goal of having every dermatology resident attend Camp Discovery.
Mental health effects of skin conditions
Much research has focused on the mental health fallout from living with chronic skin conditions, and even young children can be adversely affected. In one review of the literature, researchers concluded that pediatric skin disease, including acne, atopic dermatitis, and psoriasis, can affect quality of life, carry stigma, and lead to bullying and eventually even suicidal behavior. Another study, published earlier this year, found that atopic dermatitis affected children’s quality of life, impacting sleep and leading to feelings of being ashamed.
“It’s not necessarily about what their skin condition is and more about the psychosocial impact,’’ said Samantha Hill, MD, a pediatric and general dermatologist in Lynchburg, Va., who is the medical director of Camp Discovery in Minnesota this year.
Camp activities, reactions
The overriding theme of camp is allowing all the youth to be “just one of the kids at camp,” Dr. Hill said in an interview. “They come to do all kinds of things they don’t do in normal life because people don’t give them the credit to [be able to] do it.”
Every year, she said, “I tell my staff we are in the business of making things happen, so if there is a kid bandaged head to toe [because of a skin condition] and they want to go tubing and get in the lake, we figure out how to make it happen. We have done that multiple times.”
Newcomers are initially nervous, Dr. Hill acknowledged, but in time let their guard down. Returnees are a different story. “When kids who have been at camp before arrive, you can see them start breathing again, looking for their friends. You can see them relax right before your eyes.”
“The single most empowering thing is the realization you are not alone,” said Meena Julapalli, MD, a Houston dermatologist who is a medical team member and long-time volunteer at Camp Discovery. That, she said, and “You get to be a kid, and you don’t have to have people staring at you.”
Dr. Julapalli remembers one of her patients with keratitis-ichthyosis-deafness (KID) syndrome. “She needed more than what I could offer,” she said. “She needed camp.” At camp, the organizers found a counselor who knew sign language to accompany her. At first, she was quiet and didn’t smile much. By the end of the week, as she was about to observe her birthday, things changed. After breakfast, she was led to the stage, where fellow campers began singing – and signing the song they had just learned.
Camp staff gets it
Allyson Garin, who was diagnosed with vitiligo at age 6 months, is a camp program director at Camp Discovery in Crosslake, Minn. She first went to camp in 1990 at age 11, returning until she “aged out” at 16, then worked as a counselor. She gets it when campers tell her they hear rude comments about their skin conditions.
“I remember being in swimming pools, in lines at fairgrounds or amusement parks,” she said in an interview, “and hearing people say, ‘Don’t touch her,’ ’’ fearing contagion, perhaps. “People would make jokes about cows, since they are spotted,” she said, or people would simply step back.
All those years ago, her mother found out about the camp and decided to figure out how to get her there. She got there, and she met a fellow camper with vitiligo, and they became pen pals. “We still talk,” she said.
Meeting someone with the same skin condition, she said, isn’t just about commiserating. “There is a lot of information sharing,” on topics such as best treatments, strategies, and other conversations.
Other lessons
While campers can feel comfortable around others who also have skin conditions, and understand, the lesson extends beyond that, Ms. Garin said. “It gave me a perspective,” she said of her camp experience. “I always felt, ‘Woe is me.’ ” But when she met others with, as she said, conditions “way worse than vitiligo, it really grounds you.”
Dr. Hill agreed. Campers get the benefit of others accepting and including them, but also practicing that same attitude toward fellow campers, she said. “It insures that we are providing this environment of inclusion, but that they are practicing it as well. They need to practice it like everyone else.”
Getting parents on board
The idea of camp, especially for those at the younger end of the 8- to 16-years age range accepted for Camp Discovery, can take some getting used to for some parents. Ms. Haygood, Emily’s mother, relates to that. Her daughter’s dermatologist at the time, who is now retired, had first suggested the camp. Her first reaction? “I am not sending my chronically ill child to camp with strangers.” She also acknowledged that she, like other parents of children with a chronic illness, can be a helicopter parent.
Then, she noticed that Emily seemed interested, so she got more information, finding out that it was staffed by doctors. It all sounded good, she said, and the social interaction, she knew, would be beneficial. “Then my husband was a no,” she said, concerned about their daughter being with strangers. “Eventually he came around,” Ms. Haygood said. All along, Emily said, “it seemed fun. I was probably trying to talk them into it.” She admits she was very nervous at first, but calmed down when she realized her own dermatologist was going to be there.
Vanessa Hadley of Spring, Tex., was on board the moment she heard about Camp Discovery. “I just thought it was amazing,” she said. Her daughter Isabelle, 13, has been to the camp. “She has alopecia areata and severe eczema,” Ms. Hadley said. Now, Isabelle is returning to camp and coaching her sister Penelope, 8, who has eczema and mild alopecia and is a first-timer this summer.
One tip the 8-year-old has learned so far: Turn to your counselor for support if you’re nervous. That worked, Isabelle said, the first year when she was wary of the zipline – then surprised herself and conquered it.
Dr. Hill and Dr. Julapalli have no disclosures.
Meta-analysis finds increase in type 1 diabetes incidence, ketoacidosis during COVID pandemic
according to a recent meta-analysis.
The review compared 2 years of data from during the pandemic to data from a prepandemic period, and showed a higher incidence of type 1 diabetes in the first year (incidence rate ratio, 1.14) and second year (IRR, 1.27) of the pandemic. The investigators also found an increase in the incidence of diabetic ketoacidosis (DKA) (IRR, 1.26).
The meta-analysis included 17 studies of 38,149 children and adolescents with newly diagnosed type 1 diabetes. “Putting them all together really gave us more confidence to say this is something that we think is real,” study author Rayzel Shulman, MD, PhD, an endocrinologist at The Hospital for Sick Children in Toronto and associate professor of pediatrics at the University of Toronto, said in an interview.
The study was published in JAMA Network Open.
Increased incidence
The investigators reviewed 42 studies, including 17 that examined rates of type 1 diabetes incidence, 10 on type 2 diabetes, and 15 on DKA. The included studies all had a minimum observation period of 12 months during the pandemic and at least 12 months before it. Relative to the prepandemic period, the meta-analysis found higher rates of type 1 diabetes and DKA during the pandemic.
The review was conducted in response to questions about the methodology of study results suggesting an association between the COVID-19 pandemic and the incidence of diabetes, according to Dr. Shulman.
Although this is not the first review of studies on the connection between diabetes and COVID-19, it adds to the literature by extending the study period to 2 years of the pandemic. The longer time frame helps address potential seasonal differences in incidence and increases confidence in the results.
The investigators also sought to look at the incidence of type 2 diabetes in children but found few studies that met the study criteria. Although some studies reported rates of type 2 diabetes, most lacked information about the population, specifically, the “denominator” needed for findings regarding any association with the COVID-19 pandemic.
With greater confidence in the increased incidence of type 1 diabetes, Dr. Shulman emphasized a need to ensure sufficient resources to care for newly diagnosed patients, including education and support for families.
The study’s secondary outcome was the change in incidence rate of DKA among children with newly diagnosed diabetes. Data reported in 15 studies showed a 26% increase in DKA incidence during the first year of the pandemic.
“DKA is a serious and life-threatening condition that is preventable,” said Dr. Shulman. Symptoms of type 1 diabetes include increased thirst and urination, weight loss, and fatigue. If parents or caregivers notice these signs, Dr. Shulman advises them to seek care immediately to reduce the risk of DKA.
Possible mechanisms
In a comment, Elizabeth Sellers, MD, an endocrinologist at the Children’s Hospital Research Institute of Manitoba and associate professor of pediatrics at the University of Manitoba, both in Winnipeg, said the study’s findings on DKA are an important reminder to be attentive to symptoms of diabetes. Dr. Sellers did not participate in the meta-analysis.
One possible explanation for the increase is a hesitancy to seek care among parents and caregivers during the pandemic. “I think we use that information and turn it into a positive,” said Dr. Sellers, by increasing recognition of the symptoms. Dr. Sellers, whose research is included in the review, is part of an initiative by the Canadian Pediatric Endocrine Group to increase diabetes awareness.
The study provides important findings, particularly the second-year results, but is not designed to answer why there has been an increase in diabetes incidence, said Dr. Sellers. “You have to identify the problem first and then you can go back and look at mechanisms.”
The meta-analysis did not seek to draw conclusions about the underlying mechanisms that would explain changes in diabetes incidence but rather indicates a need for further studies to seek a better understanding of the connection. Several theories may be considered, wrote Clemens Kamrath, MD, of the Centre of Child and Adolescent Medicine at Justus Liebig University in Giessen, Germany, and colleagues in an accompanying editorial.
Studies have suggested a direct effect of infections such as COVID-19, whereby the virus damages insulin-producing beta cells. However, the commentary notes these studies do not account for asymptomatic infections among children.
Dr. Kamrath and colleagues also considered the indirect effects of the COVID-19 pandemic, which they indicate may be more likely than direct effects. These indirect effects include autoimmunity and environmental changes that occurred during the pandemic.
Researchers will need to continue monitoring the data to see if the trend persists and continue working to determine the mechanisms, said Dr. Schulman. “I don’t think this is the end of the story.”
The study was supported in part by grant funding from the department of pediatrics at The Hospital for Sick Children. Dr. Shulman, Dr. Sellers, and Dr. Kamrath reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
according to a recent meta-analysis.
The review compared 2 years of data from during the pandemic to data from a prepandemic period, and showed a higher incidence of type 1 diabetes in the first year (incidence rate ratio, 1.14) and second year (IRR, 1.27) of the pandemic. The investigators also found an increase in the incidence of diabetic ketoacidosis (DKA) (IRR, 1.26).
The meta-analysis included 17 studies of 38,149 children and adolescents with newly diagnosed type 1 diabetes. “Putting them all together really gave us more confidence to say this is something that we think is real,” study author Rayzel Shulman, MD, PhD, an endocrinologist at The Hospital for Sick Children in Toronto and associate professor of pediatrics at the University of Toronto, said in an interview.
The study was published in JAMA Network Open.
Increased incidence
The investigators reviewed 42 studies, including 17 that examined rates of type 1 diabetes incidence, 10 on type 2 diabetes, and 15 on DKA. The included studies all had a minimum observation period of 12 months during the pandemic and at least 12 months before it. Relative to the prepandemic period, the meta-analysis found higher rates of type 1 diabetes and DKA during the pandemic.
The review was conducted in response to questions about the methodology of study results suggesting an association between the COVID-19 pandemic and the incidence of diabetes, according to Dr. Shulman.
Although this is not the first review of studies on the connection between diabetes and COVID-19, it adds to the literature by extending the study period to 2 years of the pandemic. The longer time frame helps address potential seasonal differences in incidence and increases confidence in the results.
The investigators also sought to look at the incidence of type 2 diabetes in children but found few studies that met the study criteria. Although some studies reported rates of type 2 diabetes, most lacked information about the population, specifically, the “denominator” needed for findings regarding any association with the COVID-19 pandemic.
With greater confidence in the increased incidence of type 1 diabetes, Dr. Shulman emphasized a need to ensure sufficient resources to care for newly diagnosed patients, including education and support for families.
The study’s secondary outcome was the change in incidence rate of DKA among children with newly diagnosed diabetes. Data reported in 15 studies showed a 26% increase in DKA incidence during the first year of the pandemic.
“DKA is a serious and life-threatening condition that is preventable,” said Dr. Shulman. Symptoms of type 1 diabetes include increased thirst and urination, weight loss, and fatigue. If parents or caregivers notice these signs, Dr. Shulman advises them to seek care immediately to reduce the risk of DKA.
Possible mechanisms
In a comment, Elizabeth Sellers, MD, an endocrinologist at the Children’s Hospital Research Institute of Manitoba and associate professor of pediatrics at the University of Manitoba, both in Winnipeg, said the study’s findings on DKA are an important reminder to be attentive to symptoms of diabetes. Dr. Sellers did not participate in the meta-analysis.
One possible explanation for the increase is a hesitancy to seek care among parents and caregivers during the pandemic. “I think we use that information and turn it into a positive,” said Dr. Sellers, by increasing recognition of the symptoms. Dr. Sellers, whose research is included in the review, is part of an initiative by the Canadian Pediatric Endocrine Group to increase diabetes awareness.
The study provides important findings, particularly the second-year results, but is not designed to answer why there has been an increase in diabetes incidence, said Dr. Sellers. “You have to identify the problem first and then you can go back and look at mechanisms.”
The meta-analysis did not seek to draw conclusions about the underlying mechanisms that would explain changes in diabetes incidence but rather indicates a need for further studies to seek a better understanding of the connection. Several theories may be considered, wrote Clemens Kamrath, MD, of the Centre of Child and Adolescent Medicine at Justus Liebig University in Giessen, Germany, and colleagues in an accompanying editorial.
Studies have suggested a direct effect of infections such as COVID-19, whereby the virus damages insulin-producing beta cells. However, the commentary notes these studies do not account for asymptomatic infections among children.
Dr. Kamrath and colleagues also considered the indirect effects of the COVID-19 pandemic, which they indicate may be more likely than direct effects. These indirect effects include autoimmunity and environmental changes that occurred during the pandemic.
Researchers will need to continue monitoring the data to see if the trend persists and continue working to determine the mechanisms, said Dr. Schulman. “I don’t think this is the end of the story.”
The study was supported in part by grant funding from the department of pediatrics at The Hospital for Sick Children. Dr. Shulman, Dr. Sellers, and Dr. Kamrath reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
according to a recent meta-analysis.
The review compared 2 years of data from during the pandemic to data from a prepandemic period, and showed a higher incidence of type 1 diabetes in the first year (incidence rate ratio, 1.14) and second year (IRR, 1.27) of the pandemic. The investigators also found an increase in the incidence of diabetic ketoacidosis (DKA) (IRR, 1.26).
The meta-analysis included 17 studies of 38,149 children and adolescents with newly diagnosed type 1 diabetes. “Putting them all together really gave us more confidence to say this is something that we think is real,” study author Rayzel Shulman, MD, PhD, an endocrinologist at The Hospital for Sick Children in Toronto and associate professor of pediatrics at the University of Toronto, said in an interview.
The study was published in JAMA Network Open.
Increased incidence
The investigators reviewed 42 studies, including 17 that examined rates of type 1 diabetes incidence, 10 on type 2 diabetes, and 15 on DKA. The included studies all had a minimum observation period of 12 months during the pandemic and at least 12 months before it. Relative to the prepandemic period, the meta-analysis found higher rates of type 1 diabetes and DKA during the pandemic.
The review was conducted in response to questions about the methodology of study results suggesting an association between the COVID-19 pandemic and the incidence of diabetes, according to Dr. Shulman.
Although this is not the first review of studies on the connection between diabetes and COVID-19, it adds to the literature by extending the study period to 2 years of the pandemic. The longer time frame helps address potential seasonal differences in incidence and increases confidence in the results.
The investigators also sought to look at the incidence of type 2 diabetes in children but found few studies that met the study criteria. Although some studies reported rates of type 2 diabetes, most lacked information about the population, specifically, the “denominator” needed for findings regarding any association with the COVID-19 pandemic.
With greater confidence in the increased incidence of type 1 diabetes, Dr. Shulman emphasized a need to ensure sufficient resources to care for newly diagnosed patients, including education and support for families.
The study’s secondary outcome was the change in incidence rate of DKA among children with newly diagnosed diabetes. Data reported in 15 studies showed a 26% increase in DKA incidence during the first year of the pandemic.
“DKA is a serious and life-threatening condition that is preventable,” said Dr. Shulman. Symptoms of type 1 diabetes include increased thirst and urination, weight loss, and fatigue. If parents or caregivers notice these signs, Dr. Shulman advises them to seek care immediately to reduce the risk of DKA.
Possible mechanisms
In a comment, Elizabeth Sellers, MD, an endocrinologist at the Children’s Hospital Research Institute of Manitoba and associate professor of pediatrics at the University of Manitoba, both in Winnipeg, said the study’s findings on DKA are an important reminder to be attentive to symptoms of diabetes. Dr. Sellers did not participate in the meta-analysis.
One possible explanation for the increase is a hesitancy to seek care among parents and caregivers during the pandemic. “I think we use that information and turn it into a positive,” said Dr. Sellers, by increasing recognition of the symptoms. Dr. Sellers, whose research is included in the review, is part of an initiative by the Canadian Pediatric Endocrine Group to increase diabetes awareness.
The study provides important findings, particularly the second-year results, but is not designed to answer why there has been an increase in diabetes incidence, said Dr. Sellers. “You have to identify the problem first and then you can go back and look at mechanisms.”
The meta-analysis did not seek to draw conclusions about the underlying mechanisms that would explain changes in diabetes incidence but rather indicates a need for further studies to seek a better understanding of the connection. Several theories may be considered, wrote Clemens Kamrath, MD, of the Centre of Child and Adolescent Medicine at Justus Liebig University in Giessen, Germany, and colleagues in an accompanying editorial.
Studies have suggested a direct effect of infections such as COVID-19, whereby the virus damages insulin-producing beta cells. However, the commentary notes these studies do not account for asymptomatic infections among children.
Dr. Kamrath and colleagues also considered the indirect effects of the COVID-19 pandemic, which they indicate may be more likely than direct effects. These indirect effects include autoimmunity and environmental changes that occurred during the pandemic.
Researchers will need to continue monitoring the data to see if the trend persists and continue working to determine the mechanisms, said Dr. Schulman. “I don’t think this is the end of the story.”
The study was supported in part by grant funding from the department of pediatrics at The Hospital for Sick Children. Dr. Shulman, Dr. Sellers, and Dr. Kamrath reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
FROM JAMA NETWORK OPEN
More children missing developmental milestones: Survey
Nearly 9 out of every 100 U.S. children are now diagnosed with a developmental disability, according to updated figures from the CDC.
Developmental disabilities include autism, intellectual disabilities such as Down syndrome, and a range of other diagnoses related to missing developmental milestones in how a child plays, learns, or speaks.
The newly reported increase amounts to just over 1 percentage point from 2019 to 2021. In 2019, the rate of developmental disability diagnoses was about 7 in 100 children. The latest figures are from 2021 data, published this week after the CDC finished analyzing responses to the National Health Survey.
Among children ages 3-17 years old in 2021, the survey showed that:
- 1.7% had an intellectual disability.
- 3.1% had autism spectrum disorder.
- 6.1% had a diagnosis of “other developmental delay.”
No significant change was seen from 2019 to 2021 in how common it was for survey respondents to report children having autism or an intellectual disability. The overall increase was driven by a jump in reports from parents that a doctor or health professional told them their child had “any other developmental delay,” excluding autism spectrum disorder or an intellectual disability.
“A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those,” lead report author and CDC statistician Benjamin Zablotsky, PhD, told CBS News.
The CDC offers an app called Milestone Tracker to help parents watch for signs of developmental delays, in addition to operating a public health education program called “Learn the Signs. Act Early.”
The new report showed that boys were nearly twice as likely as girls to have any developmental delay, a pattern that was magnified when looking specifically at autism diagnoses. Boys were more than three times as likely as girls to be diagnosed with autism spectrum disorder. The rate of autism among boys was 4.7%, compared with 1.5% among girls.
While these latest survey results showed consistent rates of autism from 2019 to 2021, a different CDC report earlier this year showed an alarming jump in the rate of autism spectrum disorder among 8-year-olds. That report, which compared data from 2008 to 2020, showed the rate of autism among 8-year-olds rose during those 12 years from 1 in 88 kids to 1 in 36 kids.
The two analyses also differed in their findings regarding prevalence of autism when looking at children by race and ethnicity. The report from earlier this year showed that Black and Hispanic children were more likely to be diagnosed with autism, compared with White children. This latest report did not find any differences in the prevalence of autism based on a child’s race or ethnicity.
A version of this article appeared on WebMD.com.
Nearly 9 out of every 100 U.S. children are now diagnosed with a developmental disability, according to updated figures from the CDC.
Developmental disabilities include autism, intellectual disabilities such as Down syndrome, and a range of other diagnoses related to missing developmental milestones in how a child plays, learns, or speaks.
The newly reported increase amounts to just over 1 percentage point from 2019 to 2021. In 2019, the rate of developmental disability diagnoses was about 7 in 100 children. The latest figures are from 2021 data, published this week after the CDC finished analyzing responses to the National Health Survey.
Among children ages 3-17 years old in 2021, the survey showed that:
- 1.7% had an intellectual disability.
- 3.1% had autism spectrum disorder.
- 6.1% had a diagnosis of “other developmental delay.”
No significant change was seen from 2019 to 2021 in how common it was for survey respondents to report children having autism or an intellectual disability. The overall increase was driven by a jump in reports from parents that a doctor or health professional told them their child had “any other developmental delay,” excluding autism spectrum disorder or an intellectual disability.
“A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those,” lead report author and CDC statistician Benjamin Zablotsky, PhD, told CBS News.
The CDC offers an app called Milestone Tracker to help parents watch for signs of developmental delays, in addition to operating a public health education program called “Learn the Signs. Act Early.”
The new report showed that boys were nearly twice as likely as girls to have any developmental delay, a pattern that was magnified when looking specifically at autism diagnoses. Boys were more than three times as likely as girls to be diagnosed with autism spectrum disorder. The rate of autism among boys was 4.7%, compared with 1.5% among girls.
While these latest survey results showed consistent rates of autism from 2019 to 2021, a different CDC report earlier this year showed an alarming jump in the rate of autism spectrum disorder among 8-year-olds. That report, which compared data from 2008 to 2020, showed the rate of autism among 8-year-olds rose during those 12 years from 1 in 88 kids to 1 in 36 kids.
The two analyses also differed in their findings regarding prevalence of autism when looking at children by race and ethnicity. The report from earlier this year showed that Black and Hispanic children were more likely to be diagnosed with autism, compared with White children. This latest report did not find any differences in the prevalence of autism based on a child’s race or ethnicity.
A version of this article appeared on WebMD.com.
Nearly 9 out of every 100 U.S. children are now diagnosed with a developmental disability, according to updated figures from the CDC.
Developmental disabilities include autism, intellectual disabilities such as Down syndrome, and a range of other diagnoses related to missing developmental milestones in how a child plays, learns, or speaks.
The newly reported increase amounts to just over 1 percentage point from 2019 to 2021. In 2019, the rate of developmental disability diagnoses was about 7 in 100 children. The latest figures are from 2021 data, published this week after the CDC finished analyzing responses to the National Health Survey.
Among children ages 3-17 years old in 2021, the survey showed that:
- 1.7% had an intellectual disability.
- 3.1% had autism spectrum disorder.
- 6.1% had a diagnosis of “other developmental delay.”
No significant change was seen from 2019 to 2021 in how common it was for survey respondents to report children having autism or an intellectual disability. The overall increase was driven by a jump in reports from parents that a doctor or health professional told them their child had “any other developmental delay,” excluding autism spectrum disorder or an intellectual disability.
“A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those,” lead report author and CDC statistician Benjamin Zablotsky, PhD, told CBS News.
The CDC offers an app called Milestone Tracker to help parents watch for signs of developmental delays, in addition to operating a public health education program called “Learn the Signs. Act Early.”
The new report showed that boys were nearly twice as likely as girls to have any developmental delay, a pattern that was magnified when looking specifically at autism diagnoses. Boys were more than three times as likely as girls to be diagnosed with autism spectrum disorder. The rate of autism among boys was 4.7%, compared with 1.5% among girls.
While these latest survey results showed consistent rates of autism from 2019 to 2021, a different CDC report earlier this year showed an alarming jump in the rate of autism spectrum disorder among 8-year-olds. That report, which compared data from 2008 to 2020, showed the rate of autism among 8-year-olds rose during those 12 years from 1 in 88 kids to 1 in 36 kids.
The two analyses also differed in their findings regarding prevalence of autism when looking at children by race and ethnicity. The report from earlier this year showed that Black and Hispanic children were more likely to be diagnosed with autism, compared with White children. This latest report did not find any differences in the prevalence of autism based on a child’s race or ethnicity.
A version of this article appeared on WebMD.com.
FDA clears the Tandem Mobi insulin pump
The product is half the size of the company’s t:slim X2 and is now the smallest of the commercially available durable tubed pumps. It is fully controllable from a mobile app through a user’s compatible iPhone.
Features of the Mobi include a 200-unit insulin cartridge and an on-pump button that can be used instead of the phone for bolusing insulin. The device can be clipped to clothing or worn on-body with an adhesive sleeve that is sold separately.
The Mobi is compatible with all existing Tandem-branded infusion sets manufactured by the Convatec Group, and there is a new 5-inch tubing option made just for the Tandem Mobi.
The Mobi is part of a hybrid-closed loop automated delivery system, along with the current Control-IQ technology and a compatible continuous glucose monitor (CGM). The CGM sensor predicts glucose values 30 minutes ahead and adjusts insulin delivery every 5 minutes to prevent highs and lows. Users must still manually bolus for meals. The system can deliver automatic correction boluses for up to 1 hour to prevent hyperglycemia.
Limited release of the Tandem Mobi is expected in late 2023, followed by full commercial availability in early 2024.
A version of this article originally appeared on Medscape.com.
The product is half the size of the company’s t:slim X2 and is now the smallest of the commercially available durable tubed pumps. It is fully controllable from a mobile app through a user’s compatible iPhone.
Features of the Mobi include a 200-unit insulin cartridge and an on-pump button that can be used instead of the phone for bolusing insulin. The device can be clipped to clothing or worn on-body with an adhesive sleeve that is sold separately.
The Mobi is compatible with all existing Tandem-branded infusion sets manufactured by the Convatec Group, and there is a new 5-inch tubing option made just for the Tandem Mobi.
The Mobi is part of a hybrid-closed loop automated delivery system, along with the current Control-IQ technology and a compatible continuous glucose monitor (CGM). The CGM sensor predicts glucose values 30 minutes ahead and adjusts insulin delivery every 5 minutes to prevent highs and lows. Users must still manually bolus for meals. The system can deliver automatic correction boluses for up to 1 hour to prevent hyperglycemia.
Limited release of the Tandem Mobi is expected in late 2023, followed by full commercial availability in early 2024.
A version of this article originally appeared on Medscape.com.
The product is half the size of the company’s t:slim X2 and is now the smallest of the commercially available durable tubed pumps. It is fully controllable from a mobile app through a user’s compatible iPhone.
Features of the Mobi include a 200-unit insulin cartridge and an on-pump button that can be used instead of the phone for bolusing insulin. The device can be clipped to clothing or worn on-body with an adhesive sleeve that is sold separately.
The Mobi is compatible with all existing Tandem-branded infusion sets manufactured by the Convatec Group, and there is a new 5-inch tubing option made just for the Tandem Mobi.
The Mobi is part of a hybrid-closed loop automated delivery system, along with the current Control-IQ technology and a compatible continuous glucose monitor (CGM). The CGM sensor predicts glucose values 30 minutes ahead and adjusts insulin delivery every 5 minutes to prevent highs and lows. Users must still manually bolus for meals. The system can deliver automatic correction boluses for up to 1 hour to prevent hyperglycemia.
Limited release of the Tandem Mobi is expected in late 2023, followed by full commercial availability in early 2024.
A version of this article originally appeared on Medscape.com.
Child neurology: Dr. John Bodensteiner considers the path from 1993
For understanding the evolution in child neurology over the past 30 years, it would make sense to start with the science, particularly genetics, that have led to treatments and even cures for numerous inherited diseases over that time. When John Bodensteiner, MD, a pillar in the field of child neurology, was asked, he started with something different.
Parent advocacy accelerates advances in rare pediatric diseases
For the progress in many of the rare diseases seen by child neurologists in the last few decades, Dr. Bodensteiner first acknowledged parent support. “The concept was simple initially. For so many of these relatively rare diseases, like the Rett and Sturge-Weber syndromes, parents were learning of them for the first time. The support groups helped parents understand they were not alone. But it then evolved,” recalled Dr. Bodensteiner, who has been a professor of pediatrics and neurology at numerous institutions, most recently the Mayo Clinic in Rochester, Minn.
Many of these support groups first formed, or at least gained momentum, in the 1990s. “As the support groups grew, the members expanded their role to support research, in addition to supporting each other. They ended up volunteering their own data, providing more information about the epidemiology and disease course. They offered tissue samples for experimental studies. They enrolled their children in trials. And they raised funds,” Dr. Bodensteiner explained.
The impact of this advocacy has been enormous, according to Dr. Bodensteiner. As an expert in neuromuscular diseases, he worked directly with several of these groups.
Although the growth in parent advocacy took place in parallel with major advances in genetics that were driving new insights into disease pathophysiology, Dr. Bodensteiner characterized parent advocates as important partners in accelerating the transition of new information to clinical utility. He suggested that there is little doubt about the importance of their role in moving the science forward by drawing attention to rare disorders that had few, if any, treatment options at the time the advocacy groups were formed.
Since the 1990s, the list of childhood neurologic diseases for which there has been meaningful progress is long. Dr. Bodensteiner selected several examples. For Rett syndrome, key molecular mechanisms have now been isolated, providing meaningful targets that show potential for treatment. For spinal muscular atrophy (SMA), therapies have become available, one of which involves gene replacement that appears to provide cure if initiated early in life. For tuberous sclerosis complex (TSC), gene targets are showing strong promise for controlling seizures and other TSC manifestations.
It has also to be acknowledged that much of the ongoing expansion in knowledge taking place across diseases in pediatric neurology would have taken place with or without parent support. Dr. Bodensteiner singled out seizure disorders only as an illustration. “In the various forms of epilepsy, we now understand mechanisms in much greater detail than we did even a decade ago, let alone 30 years ago,” Dr. Bodensteiner said. In the context of the seizure medicines once widely employed on an empirical basis, “we now often have a clearer picture of why one drug works and not another.”
Growing pains: Child neurology evolves from a subspecialty to a specialty
Until about 10 years ago, child neurology was a subspecialty, variably placed within the departments of pediatrics or neurology based on institution. The decision to elevate child neurology to its own specialty solved some issues but created others, according to Dr. Bodensteiner.
“The initial problem was there was no immediate funding mechanism of residency slots and training,” Dr. Bodensteiner explained. The issue was particularly acute at smaller centers that had been able to support a subspecialty within another department but struggled with a new autonomous unit.
So far, the training requirements for specializing in child neurology remain largely unchanged. Clinical training requires 2 years of straight pediatrics, 1 year of adult neurology, 1 year of basic neurological science,” and 1 year of child neurology, but Dr. Bodensteiner said it might be time to reconsider. He pointed out that neurologists in general and child neurologists specifically are becoming increasingly focused in one area of expertise, such as epilepsy, neuromuscular diseases, and neurodevelopmental delay.
“It can be argued that a few months spent in a dementia clinic during training might not be the best use of time for a child neurologist working in congenital neurological diseases,” he said.
One consequence of the increasing degree of specialization in neurology overall, not just child neurology, has been the changes in recertification, according to Dr. Bodensteiner. Following a model used in other specialties, recertification in child neurology was initially based on an every-10-year examination. Ultimately, this was recognized as inconsistent with the target of keeping clinicians up to date.
“In general, I think that a lot of people waited for 9.5 years before cramming for an examination that was not necessarily relevant to the area in which they were working,” Dr. Bodensteiner said.
The revised process, carried out on an every-3-year cycle, involves board-guided review of the medical literature in 10 topic areas. Child neurologists can elect an article in any of the topic areas, but to complete their recertification process they must read articles in eight of these areas. Dr. Bodensteiner said that this approach has been more popular and is presumably more useful for staying abreast of developments.
Increased specialization necessitates collaboration
The radical increase in specialization in child neurology, like neurology in general, has been a necessary consequence of an avalanche of new information as advances in the field accelerate, but Dr. Bodensteiner cautioned that it is important for those working in these specialized areas to collaborate with others outside of their field of expertise.
“We cannot recognize what we do not know,” Dr. Bodensteiner said. If subspecialization within neurology is critical to stay current with rapid advances in very different diseases, then it also means that clinicians at every level, including within the field of child neurology, need to know when to collaborate or refer to ensure early diagnosis in challenging cases.
“Epileptologists have been trying for years to make it widely known that patients resistant to standard medications deserve referral, but I think this is increasingly true across domains,” Dr. Bodensteiner said. Neurology and child neurology are not alone, but the window of opportunity for effective intervention in children with a progressive disease might be particularly limited.
“The point is that this is more of a risk than it was 20 years ago,” said Dr. Bodensteiner, referring to the growth in new therapies. He cited data suggesting that a causative gene mutation can be identified in about 60% of rare diseases, which is a relatively new phenomenon. Of advances to improve outcomes, faster triage is becoming one of the most important in this increasingly specialized world.
With the growth in knowledge, “there is really no way to be an expert across all diseases in child neurology,” Dr. Bodensteiner said. “As physicians become increasingly insulated in their areas of expertise, I think there needs to be a greater emphasis on communication and collaboration.”
To some degree, this type of specialization has always existed, but Dr. Bodensteiner said the intensification of this trend is among the ways the field has most evolved over the past few decades. In inherited diseases that affect early child development, working together for a prompt diagnosis has assumed a new level of urgency.
For understanding the evolution in child neurology over the past 30 years, it would make sense to start with the science, particularly genetics, that have led to treatments and even cures for numerous inherited diseases over that time. When John Bodensteiner, MD, a pillar in the field of child neurology, was asked, he started with something different.
Parent advocacy accelerates advances in rare pediatric diseases
For the progress in many of the rare diseases seen by child neurologists in the last few decades, Dr. Bodensteiner first acknowledged parent support. “The concept was simple initially. For so many of these relatively rare diseases, like the Rett and Sturge-Weber syndromes, parents were learning of them for the first time. The support groups helped parents understand they were not alone. But it then evolved,” recalled Dr. Bodensteiner, who has been a professor of pediatrics and neurology at numerous institutions, most recently the Mayo Clinic in Rochester, Minn.
Many of these support groups first formed, or at least gained momentum, in the 1990s. “As the support groups grew, the members expanded their role to support research, in addition to supporting each other. They ended up volunteering their own data, providing more information about the epidemiology and disease course. They offered tissue samples for experimental studies. They enrolled their children in trials. And they raised funds,” Dr. Bodensteiner explained.
The impact of this advocacy has been enormous, according to Dr. Bodensteiner. As an expert in neuromuscular diseases, he worked directly with several of these groups.
Although the growth in parent advocacy took place in parallel with major advances in genetics that were driving new insights into disease pathophysiology, Dr. Bodensteiner characterized parent advocates as important partners in accelerating the transition of new information to clinical utility. He suggested that there is little doubt about the importance of their role in moving the science forward by drawing attention to rare disorders that had few, if any, treatment options at the time the advocacy groups were formed.
Since the 1990s, the list of childhood neurologic diseases for which there has been meaningful progress is long. Dr. Bodensteiner selected several examples. For Rett syndrome, key molecular mechanisms have now been isolated, providing meaningful targets that show potential for treatment. For spinal muscular atrophy (SMA), therapies have become available, one of which involves gene replacement that appears to provide cure if initiated early in life. For tuberous sclerosis complex (TSC), gene targets are showing strong promise for controlling seizures and other TSC manifestations.
It has also to be acknowledged that much of the ongoing expansion in knowledge taking place across diseases in pediatric neurology would have taken place with or without parent support. Dr. Bodensteiner singled out seizure disorders only as an illustration. “In the various forms of epilepsy, we now understand mechanisms in much greater detail than we did even a decade ago, let alone 30 years ago,” Dr. Bodensteiner said. In the context of the seizure medicines once widely employed on an empirical basis, “we now often have a clearer picture of why one drug works and not another.”
Growing pains: Child neurology evolves from a subspecialty to a specialty
Until about 10 years ago, child neurology was a subspecialty, variably placed within the departments of pediatrics or neurology based on institution. The decision to elevate child neurology to its own specialty solved some issues but created others, according to Dr. Bodensteiner.
“The initial problem was there was no immediate funding mechanism of residency slots and training,” Dr. Bodensteiner explained. The issue was particularly acute at smaller centers that had been able to support a subspecialty within another department but struggled with a new autonomous unit.
So far, the training requirements for specializing in child neurology remain largely unchanged. Clinical training requires 2 years of straight pediatrics, 1 year of adult neurology, 1 year of basic neurological science,” and 1 year of child neurology, but Dr. Bodensteiner said it might be time to reconsider. He pointed out that neurologists in general and child neurologists specifically are becoming increasingly focused in one area of expertise, such as epilepsy, neuromuscular diseases, and neurodevelopmental delay.
“It can be argued that a few months spent in a dementia clinic during training might not be the best use of time for a child neurologist working in congenital neurological diseases,” he said.
One consequence of the increasing degree of specialization in neurology overall, not just child neurology, has been the changes in recertification, according to Dr. Bodensteiner. Following a model used in other specialties, recertification in child neurology was initially based on an every-10-year examination. Ultimately, this was recognized as inconsistent with the target of keeping clinicians up to date.
“In general, I think that a lot of people waited for 9.5 years before cramming for an examination that was not necessarily relevant to the area in which they were working,” Dr. Bodensteiner said.
The revised process, carried out on an every-3-year cycle, involves board-guided review of the medical literature in 10 topic areas. Child neurologists can elect an article in any of the topic areas, but to complete their recertification process they must read articles in eight of these areas. Dr. Bodensteiner said that this approach has been more popular and is presumably more useful for staying abreast of developments.
Increased specialization necessitates collaboration
The radical increase in specialization in child neurology, like neurology in general, has been a necessary consequence of an avalanche of new information as advances in the field accelerate, but Dr. Bodensteiner cautioned that it is important for those working in these specialized areas to collaborate with others outside of their field of expertise.
“We cannot recognize what we do not know,” Dr. Bodensteiner said. If subspecialization within neurology is critical to stay current with rapid advances in very different diseases, then it also means that clinicians at every level, including within the field of child neurology, need to know when to collaborate or refer to ensure early diagnosis in challenging cases.
“Epileptologists have been trying for years to make it widely known that patients resistant to standard medications deserve referral, but I think this is increasingly true across domains,” Dr. Bodensteiner said. Neurology and child neurology are not alone, but the window of opportunity for effective intervention in children with a progressive disease might be particularly limited.
“The point is that this is more of a risk than it was 20 years ago,” said Dr. Bodensteiner, referring to the growth in new therapies. He cited data suggesting that a causative gene mutation can be identified in about 60% of rare diseases, which is a relatively new phenomenon. Of advances to improve outcomes, faster triage is becoming one of the most important in this increasingly specialized world.
With the growth in knowledge, “there is really no way to be an expert across all diseases in child neurology,” Dr. Bodensteiner said. “As physicians become increasingly insulated in their areas of expertise, I think there needs to be a greater emphasis on communication and collaboration.”
To some degree, this type of specialization has always existed, but Dr. Bodensteiner said the intensification of this trend is among the ways the field has most evolved over the past few decades. In inherited diseases that affect early child development, working together for a prompt diagnosis has assumed a new level of urgency.
For understanding the evolution in child neurology over the past 30 years, it would make sense to start with the science, particularly genetics, that have led to treatments and even cures for numerous inherited diseases over that time. When John Bodensteiner, MD, a pillar in the field of child neurology, was asked, he started with something different.
Parent advocacy accelerates advances in rare pediatric diseases
For the progress in many of the rare diseases seen by child neurologists in the last few decades, Dr. Bodensteiner first acknowledged parent support. “The concept was simple initially. For so many of these relatively rare diseases, like the Rett and Sturge-Weber syndromes, parents were learning of them for the first time. The support groups helped parents understand they were not alone. But it then evolved,” recalled Dr. Bodensteiner, who has been a professor of pediatrics and neurology at numerous institutions, most recently the Mayo Clinic in Rochester, Minn.
Many of these support groups first formed, or at least gained momentum, in the 1990s. “As the support groups grew, the members expanded their role to support research, in addition to supporting each other. They ended up volunteering their own data, providing more information about the epidemiology and disease course. They offered tissue samples for experimental studies. They enrolled their children in trials. And they raised funds,” Dr. Bodensteiner explained.
The impact of this advocacy has been enormous, according to Dr. Bodensteiner. As an expert in neuromuscular diseases, he worked directly with several of these groups.
Although the growth in parent advocacy took place in parallel with major advances in genetics that were driving new insights into disease pathophysiology, Dr. Bodensteiner characterized parent advocates as important partners in accelerating the transition of new information to clinical utility. He suggested that there is little doubt about the importance of their role in moving the science forward by drawing attention to rare disorders that had few, if any, treatment options at the time the advocacy groups were formed.
Since the 1990s, the list of childhood neurologic diseases for which there has been meaningful progress is long. Dr. Bodensteiner selected several examples. For Rett syndrome, key molecular mechanisms have now been isolated, providing meaningful targets that show potential for treatment. For spinal muscular atrophy (SMA), therapies have become available, one of which involves gene replacement that appears to provide cure if initiated early in life. For tuberous sclerosis complex (TSC), gene targets are showing strong promise for controlling seizures and other TSC manifestations.
It has also to be acknowledged that much of the ongoing expansion in knowledge taking place across diseases in pediatric neurology would have taken place with or without parent support. Dr. Bodensteiner singled out seizure disorders only as an illustration. “In the various forms of epilepsy, we now understand mechanisms in much greater detail than we did even a decade ago, let alone 30 years ago,” Dr. Bodensteiner said. In the context of the seizure medicines once widely employed on an empirical basis, “we now often have a clearer picture of why one drug works and not another.”
Growing pains: Child neurology evolves from a subspecialty to a specialty
Until about 10 years ago, child neurology was a subspecialty, variably placed within the departments of pediatrics or neurology based on institution. The decision to elevate child neurology to its own specialty solved some issues but created others, according to Dr. Bodensteiner.
“The initial problem was there was no immediate funding mechanism of residency slots and training,” Dr. Bodensteiner explained. The issue was particularly acute at smaller centers that had been able to support a subspecialty within another department but struggled with a new autonomous unit.
So far, the training requirements for specializing in child neurology remain largely unchanged. Clinical training requires 2 years of straight pediatrics, 1 year of adult neurology, 1 year of basic neurological science,” and 1 year of child neurology, but Dr. Bodensteiner said it might be time to reconsider. He pointed out that neurologists in general and child neurologists specifically are becoming increasingly focused in one area of expertise, such as epilepsy, neuromuscular diseases, and neurodevelopmental delay.
“It can be argued that a few months spent in a dementia clinic during training might not be the best use of time for a child neurologist working in congenital neurological diseases,” he said.
One consequence of the increasing degree of specialization in neurology overall, not just child neurology, has been the changes in recertification, according to Dr. Bodensteiner. Following a model used in other specialties, recertification in child neurology was initially based on an every-10-year examination. Ultimately, this was recognized as inconsistent with the target of keeping clinicians up to date.
“In general, I think that a lot of people waited for 9.5 years before cramming for an examination that was not necessarily relevant to the area in which they were working,” Dr. Bodensteiner said.
The revised process, carried out on an every-3-year cycle, involves board-guided review of the medical literature in 10 topic areas. Child neurologists can elect an article in any of the topic areas, but to complete their recertification process they must read articles in eight of these areas. Dr. Bodensteiner said that this approach has been more popular and is presumably more useful for staying abreast of developments.
Increased specialization necessitates collaboration
The radical increase in specialization in child neurology, like neurology in general, has been a necessary consequence of an avalanche of new information as advances in the field accelerate, but Dr. Bodensteiner cautioned that it is important for those working in these specialized areas to collaborate with others outside of their field of expertise.
“We cannot recognize what we do not know,” Dr. Bodensteiner said. If subspecialization within neurology is critical to stay current with rapid advances in very different diseases, then it also means that clinicians at every level, including within the field of child neurology, need to know when to collaborate or refer to ensure early diagnosis in challenging cases.
“Epileptologists have been trying for years to make it widely known that patients resistant to standard medications deserve referral, but I think this is increasingly true across domains,” Dr. Bodensteiner said. Neurology and child neurology are not alone, but the window of opportunity for effective intervention in children with a progressive disease might be particularly limited.
“The point is that this is more of a risk than it was 20 years ago,” said Dr. Bodensteiner, referring to the growth in new therapies. He cited data suggesting that a causative gene mutation can be identified in about 60% of rare diseases, which is a relatively new phenomenon. Of advances to improve outcomes, faster triage is becoming one of the most important in this increasingly specialized world.
With the growth in knowledge, “there is really no way to be an expert across all diseases in child neurology,” Dr. Bodensteiner said. “As physicians become increasingly insulated in their areas of expertise, I think there needs to be a greater emphasis on communication and collaboration.”
To some degree, this type of specialization has always existed, but Dr. Bodensteiner said the intensification of this trend is among the ways the field has most evolved over the past few decades. In inherited diseases that affect early child development, working together for a prompt diagnosis has assumed a new level of urgency.
A teenage girl refuses more cancer treatment; her father disagrees
This transcript has been edited for clarity.
Hi. I’m Art Caplan, PhD. I’m director of the division of medical ethics at the New York University Grossman School of Medicine.
Every once in a while at my school, I get referrals about interesting or difficult clinical cases where doctors would like some input or advice that they can consider in managing a patient. Sometimes those requests come from other hospitals to me. I’ve been doing that kind of ethics consulting, both as a member of various ethics committees and sometimes individually, when, for various reasons, doctors don’t want to go to the Ethics Committee as a first stop.
There was a very interesting case recently involving a young woman I’m going to call Tinslee. She was 17 years old and she suffered, sadly, from recurrent metastatic osteogenic sarcoma. She had bone cancer. It had first been diagnosed at the age of 9. She had received chemotherapy and been under that treatment for a while.
If osteosarcoma is treated before it spreads outside the area where it began, the 5-year survival rate for people like her is about 75%. If the cancer spreads outside of the bones and gets into surrounding tissues, organs, or – worse – into the lymph nodes and starts traveling around, the 5-year survival rate drops to about 60%. The two approaches are chemotherapy and amputation. That’s what we have to offer patients like Tinslee.
Initially, her chemotherapy worked. She went to school and enjoyed sports. She was a real fan of softball and tried to manage the team and be involved. At the time I learned about her, she was planning to go to college. Her love of softball remained, but given the recurrence of the cancer, she had no chance to pursue her athletic interests, not only as a player, but also as a manager or even as a coach for younger players. That was all off the table.
She’d been very compliant up until this time with her chemotherapy. When the recommendation came in that she undergo nonstandard chemotherapy because of the reoccurrence, with experimental drugs using an experimental protocol, she said to her family and the doctors that she didn’t want to do it. She would rather die. She couldn’t take any more chemotherapy and she certainly didn’t want to do it if it was experimental, with the outcomes of this intervention being uncertain.
Her mother said, “Her input matters. I want to listen to her.” Her mom wasn’t as adamant about doing it or not, but she really felt that Tinslee should be heard loudly because she felt she was mature enough or old enough, even though a minor, to really have a position about what it is to undergo chemotherapy.
Time matters in trying to control the spread, and the doctors were pushing for experimental intervention. I should add, by the way, that although it didn’t really drive the decision about whether to do it or not do it, experimental care like this is not covered by most insurance, and it wasn’t covered by their insurance, so they were facing a big bill if the experimental intervention was administered.
There was some money in a grant to cover some of it, but they were going to face some big financial costs. It never came up in my discussions with the doctors about what to do. I’m not sure whether it ever came up with the family’s discussion with the doctors about what to do, or even whether Tinslee was worrying and didn’t want her family to face a financial burden.
I suggested that we bring the family in. We did some counseling. We had a social worker and we brought in a pastor because these people were fairly religious. We talked about all scenarios, including accepting death, knowing that this disease was not likely to go into remission with the experimental effort; maybe it would, but the doctors were not optimistic.
We tried to talk about how much we should listen to what this young woman wanted. We knew there was the possibility of going to court and having a judge decide this, but in my experience, I do not like going to judges and courts because I know what they’re going to say. They almost always say “administer the intervention.” They don’t want to be in a position of saying don’t do something. They’re a little less willing to do that if something is experimental, but generally speaking, if you’re headed to court, it’s because you’ve decided that you want this to happen.
I felt, in all honesty, that this young woman should have some real respect of her position because the treatment was experimental. She is approaching the age of competency and consent, and she’s been through many interventions. She knows what’s involved. I think you really have to listen hard to what she’s saying.
By the way, after this case, I looked and there have been some surveys of residents in pediatrics. A large number of them said that they hadn’t received any training about what to do when mature minors refuse experimental treatments. The study I saw said that 30% had not undergone any training about this, so we certainly want to introduce that into the appropriate areas of medicine and talk about this with residents and fellows.
Long story short, we had the family meeting, we had another meeting with dad and mom and Tinslee, and the dad began to come around and he began to listen hard. Tinslee said what she wanted was to go to her prom. She wanted to get to her sister’s junior high school softball championship game. If you will, setting some smaller goals that seemed to make her very, very happy began to satisfy mom and dad and they could accept her refusal.
Ultimately, an agreement was reached that she would not undergo the experimental intervention. We agreed on a course of palliative care, recommended that as what the doctors follow, and they decided to do so. Sadly, Tinslee died. She died at home. She did make it to her prom.
I think the outcome, while difficult, sad, tragic, and a close call, was correct. Mature minors who have been through a rough life of interventions and know the price to pay – and for those who have recurrent disease and now face only experimental options – if they say no, that’s something we really have to listen to very hard.
Dr. Kaplan is director, division of medical ethics, New York University Langone Medical Center, New York. He reported a conflict of interest with Johnson & Johnson’s Panel for Compassionate Drug Use.
A version of this article first appeared on Medscape.com.
This transcript has been edited for clarity.
Hi. I’m Art Caplan, PhD. I’m director of the division of medical ethics at the New York University Grossman School of Medicine.
Every once in a while at my school, I get referrals about interesting or difficult clinical cases where doctors would like some input or advice that they can consider in managing a patient. Sometimes those requests come from other hospitals to me. I’ve been doing that kind of ethics consulting, both as a member of various ethics committees and sometimes individually, when, for various reasons, doctors don’t want to go to the Ethics Committee as a first stop.
There was a very interesting case recently involving a young woman I’m going to call Tinslee. She was 17 years old and she suffered, sadly, from recurrent metastatic osteogenic sarcoma. She had bone cancer. It had first been diagnosed at the age of 9. She had received chemotherapy and been under that treatment for a while.
If osteosarcoma is treated before it spreads outside the area where it began, the 5-year survival rate for people like her is about 75%. If the cancer spreads outside of the bones and gets into surrounding tissues, organs, or – worse – into the lymph nodes and starts traveling around, the 5-year survival rate drops to about 60%. The two approaches are chemotherapy and amputation. That’s what we have to offer patients like Tinslee.
Initially, her chemotherapy worked. She went to school and enjoyed sports. She was a real fan of softball and tried to manage the team and be involved. At the time I learned about her, she was planning to go to college. Her love of softball remained, but given the recurrence of the cancer, she had no chance to pursue her athletic interests, not only as a player, but also as a manager or even as a coach for younger players. That was all off the table.
She’d been very compliant up until this time with her chemotherapy. When the recommendation came in that she undergo nonstandard chemotherapy because of the reoccurrence, with experimental drugs using an experimental protocol, she said to her family and the doctors that she didn’t want to do it. She would rather die. She couldn’t take any more chemotherapy and she certainly didn’t want to do it if it was experimental, with the outcomes of this intervention being uncertain.
Her mother said, “Her input matters. I want to listen to her.” Her mom wasn’t as adamant about doing it or not, but she really felt that Tinslee should be heard loudly because she felt she was mature enough or old enough, even though a minor, to really have a position about what it is to undergo chemotherapy.
Time matters in trying to control the spread, and the doctors were pushing for experimental intervention. I should add, by the way, that although it didn’t really drive the decision about whether to do it or not do it, experimental care like this is not covered by most insurance, and it wasn’t covered by their insurance, so they were facing a big bill if the experimental intervention was administered.
There was some money in a grant to cover some of it, but they were going to face some big financial costs. It never came up in my discussions with the doctors about what to do. I’m not sure whether it ever came up with the family’s discussion with the doctors about what to do, or even whether Tinslee was worrying and didn’t want her family to face a financial burden.
I suggested that we bring the family in. We did some counseling. We had a social worker and we brought in a pastor because these people were fairly religious. We talked about all scenarios, including accepting death, knowing that this disease was not likely to go into remission with the experimental effort; maybe it would, but the doctors were not optimistic.
We tried to talk about how much we should listen to what this young woman wanted. We knew there was the possibility of going to court and having a judge decide this, but in my experience, I do not like going to judges and courts because I know what they’re going to say. They almost always say “administer the intervention.” They don’t want to be in a position of saying don’t do something. They’re a little less willing to do that if something is experimental, but generally speaking, if you’re headed to court, it’s because you’ve decided that you want this to happen.
I felt, in all honesty, that this young woman should have some real respect of her position because the treatment was experimental. She is approaching the age of competency and consent, and she’s been through many interventions. She knows what’s involved. I think you really have to listen hard to what she’s saying.
By the way, after this case, I looked and there have been some surveys of residents in pediatrics. A large number of them said that they hadn’t received any training about what to do when mature minors refuse experimental treatments. The study I saw said that 30% had not undergone any training about this, so we certainly want to introduce that into the appropriate areas of medicine and talk about this with residents and fellows.
Long story short, we had the family meeting, we had another meeting with dad and mom and Tinslee, and the dad began to come around and he began to listen hard. Tinslee said what she wanted was to go to her prom. She wanted to get to her sister’s junior high school softball championship game. If you will, setting some smaller goals that seemed to make her very, very happy began to satisfy mom and dad and they could accept her refusal.
Ultimately, an agreement was reached that she would not undergo the experimental intervention. We agreed on a course of palliative care, recommended that as what the doctors follow, and they decided to do so. Sadly, Tinslee died. She died at home. She did make it to her prom.
I think the outcome, while difficult, sad, tragic, and a close call, was correct. Mature minors who have been through a rough life of interventions and know the price to pay – and for those who have recurrent disease and now face only experimental options – if they say no, that’s something we really have to listen to very hard.
Dr. Kaplan is director, division of medical ethics, New York University Langone Medical Center, New York. He reported a conflict of interest with Johnson & Johnson’s Panel for Compassionate Drug Use.
A version of this article first appeared on Medscape.com.
This transcript has been edited for clarity.
Hi. I’m Art Caplan, PhD. I’m director of the division of medical ethics at the New York University Grossman School of Medicine.
Every once in a while at my school, I get referrals about interesting or difficult clinical cases where doctors would like some input or advice that they can consider in managing a patient. Sometimes those requests come from other hospitals to me. I’ve been doing that kind of ethics consulting, both as a member of various ethics committees and sometimes individually, when, for various reasons, doctors don’t want to go to the Ethics Committee as a first stop.
There was a very interesting case recently involving a young woman I’m going to call Tinslee. She was 17 years old and she suffered, sadly, from recurrent metastatic osteogenic sarcoma. She had bone cancer. It had first been diagnosed at the age of 9. She had received chemotherapy and been under that treatment for a while.
If osteosarcoma is treated before it spreads outside the area where it began, the 5-year survival rate for people like her is about 75%. If the cancer spreads outside of the bones and gets into surrounding tissues, organs, or – worse – into the lymph nodes and starts traveling around, the 5-year survival rate drops to about 60%. The two approaches are chemotherapy and amputation. That’s what we have to offer patients like Tinslee.
Initially, her chemotherapy worked. She went to school and enjoyed sports. She was a real fan of softball and tried to manage the team and be involved. At the time I learned about her, she was planning to go to college. Her love of softball remained, but given the recurrence of the cancer, she had no chance to pursue her athletic interests, not only as a player, but also as a manager or even as a coach for younger players. That was all off the table.
She’d been very compliant up until this time with her chemotherapy. When the recommendation came in that she undergo nonstandard chemotherapy because of the reoccurrence, with experimental drugs using an experimental protocol, she said to her family and the doctors that she didn’t want to do it. She would rather die. She couldn’t take any more chemotherapy and she certainly didn’t want to do it if it was experimental, with the outcomes of this intervention being uncertain.
Her mother said, “Her input matters. I want to listen to her.” Her mom wasn’t as adamant about doing it or not, but she really felt that Tinslee should be heard loudly because she felt she was mature enough or old enough, even though a minor, to really have a position about what it is to undergo chemotherapy.
Time matters in trying to control the spread, and the doctors were pushing for experimental intervention. I should add, by the way, that although it didn’t really drive the decision about whether to do it or not do it, experimental care like this is not covered by most insurance, and it wasn’t covered by their insurance, so they were facing a big bill if the experimental intervention was administered.
There was some money in a grant to cover some of it, but they were going to face some big financial costs. It never came up in my discussions with the doctors about what to do. I’m not sure whether it ever came up with the family’s discussion with the doctors about what to do, or even whether Tinslee was worrying and didn’t want her family to face a financial burden.
I suggested that we bring the family in. We did some counseling. We had a social worker and we brought in a pastor because these people were fairly religious. We talked about all scenarios, including accepting death, knowing that this disease was not likely to go into remission with the experimental effort; maybe it would, but the doctors were not optimistic.
We tried to talk about how much we should listen to what this young woman wanted. We knew there was the possibility of going to court and having a judge decide this, but in my experience, I do not like going to judges and courts because I know what they’re going to say. They almost always say “administer the intervention.” They don’t want to be in a position of saying don’t do something. They’re a little less willing to do that if something is experimental, but generally speaking, if you’re headed to court, it’s because you’ve decided that you want this to happen.
I felt, in all honesty, that this young woman should have some real respect of her position because the treatment was experimental. She is approaching the age of competency and consent, and she’s been through many interventions. She knows what’s involved. I think you really have to listen hard to what she’s saying.
By the way, after this case, I looked and there have been some surveys of residents in pediatrics. A large number of them said that they hadn’t received any training about what to do when mature minors refuse experimental treatments. The study I saw said that 30% had not undergone any training about this, so we certainly want to introduce that into the appropriate areas of medicine and talk about this with residents and fellows.
Long story short, we had the family meeting, we had another meeting with dad and mom and Tinslee, and the dad began to come around and he began to listen hard. Tinslee said what she wanted was to go to her prom. She wanted to get to her sister’s junior high school softball championship game. If you will, setting some smaller goals that seemed to make her very, very happy began to satisfy mom and dad and they could accept her refusal.
Ultimately, an agreement was reached that she would not undergo the experimental intervention. We agreed on a course of palliative care, recommended that as what the doctors follow, and they decided to do so. Sadly, Tinslee died. She died at home. She did make it to her prom.
I think the outcome, while difficult, sad, tragic, and a close call, was correct. Mature minors who have been through a rough life of interventions and know the price to pay – and for those who have recurrent disease and now face only experimental options – if they say no, that’s something we really have to listen to very hard.
Dr. Kaplan is director, division of medical ethics, New York University Langone Medical Center, New York. He reported a conflict of interest with Johnson & Johnson’s Panel for Compassionate Drug Use.
A version of this article first appeared on Medscape.com.
Weighing childhood obesity interventions
A teenager who weighed 300 lb and was homeschooled because he was too big to fit in a classroom chair is among the patients Manal Habib, MD, has seen in her pediatric endocrinology practice.
The boy, a social butterfly who hated isolation and blamed himself for his “poor choices,” turned out to have an MC4R mutation that interfered with proper metabolism and satiation signals.
“People often blame obese and overweight people for not having enough willpower, but it’s often a physiological problem,” said Dr. Habib, who works at the University of California, Los Angeles.
She is among the clinicians offering more aggressive forms of weight management, prescribing medications, including metformin, semaglutide, and liraglutide – often off-label – to help children and teens with obesity who do not respond to lifestyle changes.
The results of intensive interventions can be life-changing: The teen Dr. Habib treated is back at school, playing sports, and no longer needs drugs to reduce cholesterol and blood pressure. He now takes a low maintenance dose of a weight-loss medication.
But the long-term effects of these new agents on children and teens are poorly understood, and both medication and surgery are associated with significant complications. Pediatricians treating kids pre- or post-intervention should be alert to a range of physical, psychological, and behavioral risks and complications.
Keeping bones healthy
Pediatricians should be aware of the risk to bone health in patients who undergo surgery, according to Misra Madhusmita, MD, chief of pediatric endocrinology at Massachusetts General Hospital in Boston. In a recent study, Dr. Madhusmita and her colleagues found that sleeve gastrectomy reduced vertebral bone strength in adolescents and young adults.
“This is a time of life when bone mass is typically accruing rapidly,” Dr. Madhusmita told this news organization. “A deleterious effect on bone accrual at this time of life raises concerns about suboptimal acquisition of peak bone mass, which is typically attained in early adult life and is a key factor determining bone health and fracture risk in later life.”
Reduced skeletal loading and muscle mass can weaken bones, as can malabsorption of nutrients. Fat loss can trigger lower levels of bioavailable androgens and their subsequent conversion to estrogen, negatively affecting bone density. And sleeve gastrectomy in particular lowers ghrelin, another hormone influencing skeletal health.
Clinicians should advise patients who have had surgery to follow a healthy diet and consume sufficient levels of calcium and vitamin D, said Dr. Madhusmita. Weight-bearing exercises, weight training, and resistance training are also imperative to build bone mass and muscle. Any preexisting conditions or lifestyle factors that weaken the bones should be taken into consideration.
Managing expectations
The long-term effects of weight loss medications on children are less documented than with surgery, according to Caren Mangarelli, MD, a former primary care physician who is now medical director of both the adolescent bariatric program and the children’s wellness and weight management clinic at Lurie Children’s Hospital in Chicago, Ill.
But one significant known risk is the potential for rebound weight gain and the complications like high blood pressure and high blood sugar that go with it if the patient stops medication. Dr. Mangarelli said that many clinicians lack the training required to safely facilitate weight loss medications for kids.
“We have to remember that obesity is a chronic disease, especially for those with more severe forms,” she said. “They’re not likely to outgrow it. It’s not like, ‘Oh, we’ll just put a patient on medication, they’ll lose weight, and we’ll take them off of it,’ because you could create a bad cycle of losing weight, followed by metabolism slowing down, hunger cues going up, and weight going back up.”
Making the risks of stopping medication clear and supporting compliance are essential, especially when it comes to injectables like semaglutide, which can be more burdensome than taking pills, requiring weekly subcutaneous injections. Pediatricians should ensure that families understand that medication is a long-term solution, Dr. Habib said.
Many families and patients “want a quick result. They’re focused on a specific size or weight, and they want to take the medication for a short period without changing anything else,” Dr. Habib said.
But children with genetic abnormalities or severe obesity could be on medication for their entire lives. Patients who make significant healthy lifestyle changes have a greater chance of weaning off drug therapy.
But “it’s hard with children because they’re dependent on their family,” Dr. Habib said. “One of the first things that I talk about with families is that it’s very important for everyone to be involved in making healthy changes, especially the parents, because the kids are going to follow their lifestyle and choices, not necessarily what they tell them to do.”
The behavioral and mental
One of Dr. Habib’s most striking cases was a 6-year-old patient with autism spectrum disorder experiencing early-onset puberty. Her condition made it difficult for her parents to enforce behavioral and lifestyle changes, making medication the best option to normalize the young girl’s body.
“The goal in this case is not necessarily to help her lose weight, but to prevent her from having severe health risks at such a young age,” said Habib.
Though medication may be the best solution when other options have failed, the ease of using medication may mean clinicians fail to address the complex emotional and psychosocial factors that can both cause and result from obesity.
“A lot of families think that if just this one thing were better, everything else would fall into place,” Habib said. “But there often are multiple layers to treating the patient.”
According to Cambria Garrell, MD, a pediatrician at the UCLA Fit for Healthy Weight Program in Los Angeles, pediatricians should be aware of the psychosocial and mental health factors such as undiagnosed mental illness or family dysfunction.
Dr. Garrell sometimes cares for children with undiagnosed mental health disorders. Children with conditions like attention-deficit/hyperactivity disorder and autism spectrum disorders may struggle with eating because of impulse control and sensory processing issues. Family functioning, issues at school, and lack of sleep are also major contributors to obesity to screen for.
“We really like to think about the environmental and psychosocial factors contributing to obesity instead of just pathologizing the weight,” Dr. Garrell said.
Risk for alcohol abuse
Bariatric and metabolic surgeries are associated with an increased risk for alcohol use disorder (AUD). Pediatricians treating children pre- or post-op should ensure that patients receive behavioral and mental health services to minimize the risk for alcohol abuse.
The risk for AUD is likely the result of changes to the way the body metabolizes alcohol, resulting in heightened sensitivity to it, although research is not conclusive, according to Dr. Mangarelli.
The risk for AUD is likely multifactorial, Dr. Mangarelli said.
“We don’t totally understand all of it, but if you’re experiencing a high more easily, that may lead to misuse,” Dr. Mangarelli said. “It’s also important to remember that this population of patients has experienced stigma for a very long time, and they often have associated mental health and body image issues.”
“Those problems don’t disappear on their own,” she added. “You want to make sure that patients are hooked into behavioral and mental health services before surgery so that they have somebody who’s following them after surgery.”
A version of this article first appeared on Medscape.com.
A teenager who weighed 300 lb and was homeschooled because he was too big to fit in a classroom chair is among the patients Manal Habib, MD, has seen in her pediatric endocrinology practice.
The boy, a social butterfly who hated isolation and blamed himself for his “poor choices,” turned out to have an MC4R mutation that interfered with proper metabolism and satiation signals.
“People often blame obese and overweight people for not having enough willpower, but it’s often a physiological problem,” said Dr. Habib, who works at the University of California, Los Angeles.
She is among the clinicians offering more aggressive forms of weight management, prescribing medications, including metformin, semaglutide, and liraglutide – often off-label – to help children and teens with obesity who do not respond to lifestyle changes.
The results of intensive interventions can be life-changing: The teen Dr. Habib treated is back at school, playing sports, and no longer needs drugs to reduce cholesterol and blood pressure. He now takes a low maintenance dose of a weight-loss medication.
But the long-term effects of these new agents on children and teens are poorly understood, and both medication and surgery are associated with significant complications. Pediatricians treating kids pre- or post-intervention should be alert to a range of physical, psychological, and behavioral risks and complications.
Keeping bones healthy
Pediatricians should be aware of the risk to bone health in patients who undergo surgery, according to Misra Madhusmita, MD, chief of pediatric endocrinology at Massachusetts General Hospital in Boston. In a recent study, Dr. Madhusmita and her colleagues found that sleeve gastrectomy reduced vertebral bone strength in adolescents and young adults.
“This is a time of life when bone mass is typically accruing rapidly,” Dr. Madhusmita told this news organization. “A deleterious effect on bone accrual at this time of life raises concerns about suboptimal acquisition of peak bone mass, which is typically attained in early adult life and is a key factor determining bone health and fracture risk in later life.”
Reduced skeletal loading and muscle mass can weaken bones, as can malabsorption of nutrients. Fat loss can trigger lower levels of bioavailable androgens and their subsequent conversion to estrogen, negatively affecting bone density. And sleeve gastrectomy in particular lowers ghrelin, another hormone influencing skeletal health.
Clinicians should advise patients who have had surgery to follow a healthy diet and consume sufficient levels of calcium and vitamin D, said Dr. Madhusmita. Weight-bearing exercises, weight training, and resistance training are also imperative to build bone mass and muscle. Any preexisting conditions or lifestyle factors that weaken the bones should be taken into consideration.
Managing expectations
The long-term effects of weight loss medications on children are less documented than with surgery, according to Caren Mangarelli, MD, a former primary care physician who is now medical director of both the adolescent bariatric program and the children’s wellness and weight management clinic at Lurie Children’s Hospital in Chicago, Ill.
But one significant known risk is the potential for rebound weight gain and the complications like high blood pressure and high blood sugar that go with it if the patient stops medication. Dr. Mangarelli said that many clinicians lack the training required to safely facilitate weight loss medications for kids.
“We have to remember that obesity is a chronic disease, especially for those with more severe forms,” she said. “They’re not likely to outgrow it. It’s not like, ‘Oh, we’ll just put a patient on medication, they’ll lose weight, and we’ll take them off of it,’ because you could create a bad cycle of losing weight, followed by metabolism slowing down, hunger cues going up, and weight going back up.”
Making the risks of stopping medication clear and supporting compliance are essential, especially when it comes to injectables like semaglutide, which can be more burdensome than taking pills, requiring weekly subcutaneous injections. Pediatricians should ensure that families understand that medication is a long-term solution, Dr. Habib said.
Many families and patients “want a quick result. They’re focused on a specific size or weight, and they want to take the medication for a short period without changing anything else,” Dr. Habib said.
But children with genetic abnormalities or severe obesity could be on medication for their entire lives. Patients who make significant healthy lifestyle changes have a greater chance of weaning off drug therapy.
But “it’s hard with children because they’re dependent on their family,” Dr. Habib said. “One of the first things that I talk about with families is that it’s very important for everyone to be involved in making healthy changes, especially the parents, because the kids are going to follow their lifestyle and choices, not necessarily what they tell them to do.”
The behavioral and mental
One of Dr. Habib’s most striking cases was a 6-year-old patient with autism spectrum disorder experiencing early-onset puberty. Her condition made it difficult for her parents to enforce behavioral and lifestyle changes, making medication the best option to normalize the young girl’s body.
“The goal in this case is not necessarily to help her lose weight, but to prevent her from having severe health risks at such a young age,” said Habib.
Though medication may be the best solution when other options have failed, the ease of using medication may mean clinicians fail to address the complex emotional and psychosocial factors that can both cause and result from obesity.
“A lot of families think that if just this one thing were better, everything else would fall into place,” Habib said. “But there often are multiple layers to treating the patient.”
According to Cambria Garrell, MD, a pediatrician at the UCLA Fit for Healthy Weight Program in Los Angeles, pediatricians should be aware of the psychosocial and mental health factors such as undiagnosed mental illness or family dysfunction.
Dr. Garrell sometimes cares for children with undiagnosed mental health disorders. Children with conditions like attention-deficit/hyperactivity disorder and autism spectrum disorders may struggle with eating because of impulse control and sensory processing issues. Family functioning, issues at school, and lack of sleep are also major contributors to obesity to screen for.
“We really like to think about the environmental and psychosocial factors contributing to obesity instead of just pathologizing the weight,” Dr. Garrell said.
Risk for alcohol abuse
Bariatric and metabolic surgeries are associated with an increased risk for alcohol use disorder (AUD). Pediatricians treating children pre- or post-op should ensure that patients receive behavioral and mental health services to minimize the risk for alcohol abuse.
The risk for AUD is likely the result of changes to the way the body metabolizes alcohol, resulting in heightened sensitivity to it, although research is not conclusive, according to Dr. Mangarelli.
The risk for AUD is likely multifactorial, Dr. Mangarelli said.
“We don’t totally understand all of it, but if you’re experiencing a high more easily, that may lead to misuse,” Dr. Mangarelli said. “It’s also important to remember that this population of patients has experienced stigma for a very long time, and they often have associated mental health and body image issues.”
“Those problems don’t disappear on their own,” she added. “You want to make sure that patients are hooked into behavioral and mental health services before surgery so that they have somebody who’s following them after surgery.”
A version of this article first appeared on Medscape.com.
A teenager who weighed 300 lb and was homeschooled because he was too big to fit in a classroom chair is among the patients Manal Habib, MD, has seen in her pediatric endocrinology practice.
The boy, a social butterfly who hated isolation and blamed himself for his “poor choices,” turned out to have an MC4R mutation that interfered with proper metabolism and satiation signals.
“People often blame obese and overweight people for not having enough willpower, but it’s often a physiological problem,” said Dr. Habib, who works at the University of California, Los Angeles.
She is among the clinicians offering more aggressive forms of weight management, prescribing medications, including metformin, semaglutide, and liraglutide – often off-label – to help children and teens with obesity who do not respond to lifestyle changes.
The results of intensive interventions can be life-changing: The teen Dr. Habib treated is back at school, playing sports, and no longer needs drugs to reduce cholesterol and blood pressure. He now takes a low maintenance dose of a weight-loss medication.
But the long-term effects of these new agents on children and teens are poorly understood, and both medication and surgery are associated with significant complications. Pediatricians treating kids pre- or post-intervention should be alert to a range of physical, psychological, and behavioral risks and complications.
Keeping bones healthy
Pediatricians should be aware of the risk to bone health in patients who undergo surgery, according to Misra Madhusmita, MD, chief of pediatric endocrinology at Massachusetts General Hospital in Boston. In a recent study, Dr. Madhusmita and her colleagues found that sleeve gastrectomy reduced vertebral bone strength in adolescents and young adults.
“This is a time of life when bone mass is typically accruing rapidly,” Dr. Madhusmita told this news organization. “A deleterious effect on bone accrual at this time of life raises concerns about suboptimal acquisition of peak bone mass, which is typically attained in early adult life and is a key factor determining bone health and fracture risk in later life.”
Reduced skeletal loading and muscle mass can weaken bones, as can malabsorption of nutrients. Fat loss can trigger lower levels of bioavailable androgens and their subsequent conversion to estrogen, negatively affecting bone density. And sleeve gastrectomy in particular lowers ghrelin, another hormone influencing skeletal health.
Clinicians should advise patients who have had surgery to follow a healthy diet and consume sufficient levels of calcium and vitamin D, said Dr. Madhusmita. Weight-bearing exercises, weight training, and resistance training are also imperative to build bone mass and muscle. Any preexisting conditions or lifestyle factors that weaken the bones should be taken into consideration.
Managing expectations
The long-term effects of weight loss medications on children are less documented than with surgery, according to Caren Mangarelli, MD, a former primary care physician who is now medical director of both the adolescent bariatric program and the children’s wellness and weight management clinic at Lurie Children’s Hospital in Chicago, Ill.
But one significant known risk is the potential for rebound weight gain and the complications like high blood pressure and high blood sugar that go with it if the patient stops medication. Dr. Mangarelli said that many clinicians lack the training required to safely facilitate weight loss medications for kids.
“We have to remember that obesity is a chronic disease, especially for those with more severe forms,” she said. “They’re not likely to outgrow it. It’s not like, ‘Oh, we’ll just put a patient on medication, they’ll lose weight, and we’ll take them off of it,’ because you could create a bad cycle of losing weight, followed by metabolism slowing down, hunger cues going up, and weight going back up.”
Making the risks of stopping medication clear and supporting compliance are essential, especially when it comes to injectables like semaglutide, which can be more burdensome than taking pills, requiring weekly subcutaneous injections. Pediatricians should ensure that families understand that medication is a long-term solution, Dr. Habib said.
Many families and patients “want a quick result. They’re focused on a specific size or weight, and they want to take the medication for a short period without changing anything else,” Dr. Habib said.
But children with genetic abnormalities or severe obesity could be on medication for their entire lives. Patients who make significant healthy lifestyle changes have a greater chance of weaning off drug therapy.
But “it’s hard with children because they’re dependent on their family,” Dr. Habib said. “One of the first things that I talk about with families is that it’s very important for everyone to be involved in making healthy changes, especially the parents, because the kids are going to follow their lifestyle and choices, not necessarily what they tell them to do.”
The behavioral and mental
One of Dr. Habib’s most striking cases was a 6-year-old patient with autism spectrum disorder experiencing early-onset puberty. Her condition made it difficult for her parents to enforce behavioral and lifestyle changes, making medication the best option to normalize the young girl’s body.
“The goal in this case is not necessarily to help her lose weight, but to prevent her from having severe health risks at such a young age,” said Habib.
Though medication may be the best solution when other options have failed, the ease of using medication may mean clinicians fail to address the complex emotional and psychosocial factors that can both cause and result from obesity.
“A lot of families think that if just this one thing were better, everything else would fall into place,” Habib said. “But there often are multiple layers to treating the patient.”
According to Cambria Garrell, MD, a pediatrician at the UCLA Fit for Healthy Weight Program in Los Angeles, pediatricians should be aware of the psychosocial and mental health factors such as undiagnosed mental illness or family dysfunction.
Dr. Garrell sometimes cares for children with undiagnosed mental health disorders. Children with conditions like attention-deficit/hyperactivity disorder and autism spectrum disorders may struggle with eating because of impulse control and sensory processing issues. Family functioning, issues at school, and lack of sleep are also major contributors to obesity to screen for.
“We really like to think about the environmental and psychosocial factors contributing to obesity instead of just pathologizing the weight,” Dr. Garrell said.
Risk for alcohol abuse
Bariatric and metabolic surgeries are associated with an increased risk for alcohol use disorder (AUD). Pediatricians treating children pre- or post-op should ensure that patients receive behavioral and mental health services to minimize the risk for alcohol abuse.
The risk for AUD is likely the result of changes to the way the body metabolizes alcohol, resulting in heightened sensitivity to it, although research is not conclusive, according to Dr. Mangarelli.
The risk for AUD is likely multifactorial, Dr. Mangarelli said.
“We don’t totally understand all of it, but if you’re experiencing a high more easily, that may lead to misuse,” Dr. Mangarelli said. “It’s also important to remember that this population of patients has experienced stigma for a very long time, and they often have associated mental health and body image issues.”
“Those problems don’t disappear on their own,” she added. “You want to make sure that patients are hooked into behavioral and mental health services before surgery so that they have somebody who’s following them after surgery.”
A version of this article first appeared on Medscape.com.
‘Body size is not a choice’ and deserves legal protections
Legislators in New York City recently approved a bill specifically prohibiting weight- and height-based discrimination, on par with existing protections for gender, race, sexual orientation, and other personal identities. Other U.S. cities, as well as New York state, are considering similar moves.
Weight-based discrimination in the United States has increased by an estimated 66% over the past decade, putting it on par with the prevalence of racial discrimination. More than 40% of adult Americans and 18% of children report experiencing weight discrimination in employment, school, and/or health care settings – as well as within interpersonal relationships – demonstrating a clear need to have legal protections in place.
For obesity advocates in Canada, the news from New York triggered a moment of reflection to consider how our own advocacy efforts have fared over the years, or not. Just like in the United States, body size and obesity (and appearance in general) are not specifically protected grounds under human rights legislation in Canada (for example, the Canadian Human Rights Act), unlike race, gender, sexual orientation, and religion.
Case law is uneven across the Canadian provinces when it comes to determining whether obesity is even a disease and/or a disability. And despite broad support for anti–weight discrimination policies in Canada (Front Public Health. 2023 Apr 17;11:1060794; Milbank Q. 2015 Dec;93[4]:691-731), years of advocacy at the national and provincial levels have not led to any legislative changes (Ramos Salas Obes Rev. 2017 Nov;18[11]:1323-35; Can J Diabetes. 2015 Apr. doi: 10.1016/j.jcjd.2015.01.009). A 2017 private members bill seeking to add protection for body size to Manitoba’s human rights code was defeated, with many members of the legislature citing enforcement difficulties as the reason for voting down the proposition.
Some obesity advocates have argued that people living with obesity can be protected under the grounds of disability in the Canadian Human Rights Act. To be protected, however, individuals must demonstrate that there is actual or perceived disability relating to their weight or size; yet, many people living with obesity and those who have a higher weight don’t perceive themselves as having a disability.
In our view, the disparate viewpoints on the worthiness of considering body size a human rights issue could be resolved, at least partially, by wider understanding and adoption of the relatively new clinical definition of obesity. This definition holds that obesity is not about size; an obesity diagnosis can be made only when objective clinical investigations identify that excess or abnormal adiposity (fat tissue) impairs health.
While obesity advocates use the clinical definition of obesity, weight and body size proponents disagree that obesity is a chronic disease, and in fact believe that treating it as such can be stigmatizing. In a sense, this can sometimes be true, as not all people with larger bodies have obesity per the new definition but risk being identified as “unhealthy” in the clinical world. Bias, it turns out, can be a two-way street.
Regardless of the advocacy strategy used, it’s clear that specific anti–weight discrimination laws are needed in Canada. One in four Canadian adults report experiencing discrimination in their day-to-day life, with race, gender, age, and weight being the most commonly reported forms. To refuse to protect them against some, but not all, forms of discrimination is itself unjust, and is surely rooted in the age-old misinformed concept that excess weight is the result of laziness, poor food choices, and lack of physical activity, among other moral failings.
Including body size in human rights codes may provide a mechanism to seek legal remedy from discriminatory acts, but it will do little to address rampant weight bias, in the same way that race-based legal protections don’t eradicate racism. And it’s not just the legal community that fails to understand that weight is, by and large, a product of our environment and our genes. Weight bias and stigma are well documented in media, workplaces, the home, and in health care systems.
The solution, in our minds, is meaningful education across all these domains, reinforcing that weight is not a behavior, just as health is not a size. If we truly understand and embrace these concepts, then as a society we may someday recognize that body size is not a choice, just like race, sexual orientation, gender identity, and other individual characteristics. And if it’s not a choice, if it’s not a behavior, then it deserves the same protections.
At the same time, people with obesity deserve to seek evidence-based treatment, just as those at higher weights who experience no weight or adiposity-related health issues deserve not to be identified as having a disease simply because of their size.
If we all follow the science, we might yet turn a common understanding into more equitable outcomes for all.
Dr. Ramos Salas and Mr. Hussey are research consultants for Replica Communications, Hamilton, Ont. She disclosed ties with the Canadian Institutes of Health Research, European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, The Obesity Society, World Obesity, and the World Health Organization. Mr. Hussey disclosed ties with the European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, and the World Health Organization (Nutrition and Food Safety).
A version of this article originally appeared on Medscape.com.
Legislators in New York City recently approved a bill specifically prohibiting weight- and height-based discrimination, on par with existing protections for gender, race, sexual orientation, and other personal identities. Other U.S. cities, as well as New York state, are considering similar moves.
Weight-based discrimination in the United States has increased by an estimated 66% over the past decade, putting it on par with the prevalence of racial discrimination. More than 40% of adult Americans and 18% of children report experiencing weight discrimination in employment, school, and/or health care settings – as well as within interpersonal relationships – demonstrating a clear need to have legal protections in place.
For obesity advocates in Canada, the news from New York triggered a moment of reflection to consider how our own advocacy efforts have fared over the years, or not. Just like in the United States, body size and obesity (and appearance in general) are not specifically protected grounds under human rights legislation in Canada (for example, the Canadian Human Rights Act), unlike race, gender, sexual orientation, and religion.
Case law is uneven across the Canadian provinces when it comes to determining whether obesity is even a disease and/or a disability. And despite broad support for anti–weight discrimination policies in Canada (Front Public Health. 2023 Apr 17;11:1060794; Milbank Q. 2015 Dec;93[4]:691-731), years of advocacy at the national and provincial levels have not led to any legislative changes (Ramos Salas Obes Rev. 2017 Nov;18[11]:1323-35; Can J Diabetes. 2015 Apr. doi: 10.1016/j.jcjd.2015.01.009). A 2017 private members bill seeking to add protection for body size to Manitoba’s human rights code was defeated, with many members of the legislature citing enforcement difficulties as the reason for voting down the proposition.
Some obesity advocates have argued that people living with obesity can be protected under the grounds of disability in the Canadian Human Rights Act. To be protected, however, individuals must demonstrate that there is actual or perceived disability relating to their weight or size; yet, many people living with obesity and those who have a higher weight don’t perceive themselves as having a disability.
In our view, the disparate viewpoints on the worthiness of considering body size a human rights issue could be resolved, at least partially, by wider understanding and adoption of the relatively new clinical definition of obesity. This definition holds that obesity is not about size; an obesity diagnosis can be made only when objective clinical investigations identify that excess or abnormal adiposity (fat tissue) impairs health.
While obesity advocates use the clinical definition of obesity, weight and body size proponents disagree that obesity is a chronic disease, and in fact believe that treating it as such can be stigmatizing. In a sense, this can sometimes be true, as not all people with larger bodies have obesity per the new definition but risk being identified as “unhealthy” in the clinical world. Bias, it turns out, can be a two-way street.
Regardless of the advocacy strategy used, it’s clear that specific anti–weight discrimination laws are needed in Canada. One in four Canadian adults report experiencing discrimination in their day-to-day life, with race, gender, age, and weight being the most commonly reported forms. To refuse to protect them against some, but not all, forms of discrimination is itself unjust, and is surely rooted in the age-old misinformed concept that excess weight is the result of laziness, poor food choices, and lack of physical activity, among other moral failings.
Including body size in human rights codes may provide a mechanism to seek legal remedy from discriminatory acts, but it will do little to address rampant weight bias, in the same way that race-based legal protections don’t eradicate racism. And it’s not just the legal community that fails to understand that weight is, by and large, a product of our environment and our genes. Weight bias and stigma are well documented in media, workplaces, the home, and in health care systems.
The solution, in our minds, is meaningful education across all these domains, reinforcing that weight is not a behavior, just as health is not a size. If we truly understand and embrace these concepts, then as a society we may someday recognize that body size is not a choice, just like race, sexual orientation, gender identity, and other individual characteristics. And if it’s not a choice, if it’s not a behavior, then it deserves the same protections.
At the same time, people with obesity deserve to seek evidence-based treatment, just as those at higher weights who experience no weight or adiposity-related health issues deserve not to be identified as having a disease simply because of their size.
If we all follow the science, we might yet turn a common understanding into more equitable outcomes for all.
Dr. Ramos Salas and Mr. Hussey are research consultants for Replica Communications, Hamilton, Ont. She disclosed ties with the Canadian Institutes of Health Research, European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, The Obesity Society, World Obesity, and the World Health Organization. Mr. Hussey disclosed ties with the European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, and the World Health Organization (Nutrition and Food Safety).
A version of this article originally appeared on Medscape.com.
Legislators in New York City recently approved a bill specifically prohibiting weight- and height-based discrimination, on par with existing protections for gender, race, sexual orientation, and other personal identities. Other U.S. cities, as well as New York state, are considering similar moves.
Weight-based discrimination in the United States has increased by an estimated 66% over the past decade, putting it on par with the prevalence of racial discrimination. More than 40% of adult Americans and 18% of children report experiencing weight discrimination in employment, school, and/or health care settings – as well as within interpersonal relationships – demonstrating a clear need to have legal protections in place.
For obesity advocates in Canada, the news from New York triggered a moment of reflection to consider how our own advocacy efforts have fared over the years, or not. Just like in the United States, body size and obesity (and appearance in general) are not specifically protected grounds under human rights legislation in Canada (for example, the Canadian Human Rights Act), unlike race, gender, sexual orientation, and religion.
Case law is uneven across the Canadian provinces when it comes to determining whether obesity is even a disease and/or a disability. And despite broad support for anti–weight discrimination policies in Canada (Front Public Health. 2023 Apr 17;11:1060794; Milbank Q. 2015 Dec;93[4]:691-731), years of advocacy at the national and provincial levels have not led to any legislative changes (Ramos Salas Obes Rev. 2017 Nov;18[11]:1323-35; Can J Diabetes. 2015 Apr. doi: 10.1016/j.jcjd.2015.01.009). A 2017 private members bill seeking to add protection for body size to Manitoba’s human rights code was defeated, with many members of the legislature citing enforcement difficulties as the reason for voting down the proposition.
Some obesity advocates have argued that people living with obesity can be protected under the grounds of disability in the Canadian Human Rights Act. To be protected, however, individuals must demonstrate that there is actual or perceived disability relating to their weight or size; yet, many people living with obesity and those who have a higher weight don’t perceive themselves as having a disability.
In our view, the disparate viewpoints on the worthiness of considering body size a human rights issue could be resolved, at least partially, by wider understanding and adoption of the relatively new clinical definition of obesity. This definition holds that obesity is not about size; an obesity diagnosis can be made only when objective clinical investigations identify that excess or abnormal adiposity (fat tissue) impairs health.
While obesity advocates use the clinical definition of obesity, weight and body size proponents disagree that obesity is a chronic disease, and in fact believe that treating it as such can be stigmatizing. In a sense, this can sometimes be true, as not all people with larger bodies have obesity per the new definition but risk being identified as “unhealthy” in the clinical world. Bias, it turns out, can be a two-way street.
Regardless of the advocacy strategy used, it’s clear that specific anti–weight discrimination laws are needed in Canada. One in four Canadian adults report experiencing discrimination in their day-to-day life, with race, gender, age, and weight being the most commonly reported forms. To refuse to protect them against some, but not all, forms of discrimination is itself unjust, and is surely rooted in the age-old misinformed concept that excess weight is the result of laziness, poor food choices, and lack of physical activity, among other moral failings.
Including body size in human rights codes may provide a mechanism to seek legal remedy from discriminatory acts, but it will do little to address rampant weight bias, in the same way that race-based legal protections don’t eradicate racism. And it’s not just the legal community that fails to understand that weight is, by and large, a product of our environment and our genes. Weight bias and stigma are well documented in media, workplaces, the home, and in health care systems.
The solution, in our minds, is meaningful education across all these domains, reinforcing that weight is not a behavior, just as health is not a size. If we truly understand and embrace these concepts, then as a society we may someday recognize that body size is not a choice, just like race, sexual orientation, gender identity, and other individual characteristics. And if it’s not a choice, if it’s not a behavior, then it deserves the same protections.
At the same time, people with obesity deserve to seek evidence-based treatment, just as those at higher weights who experience no weight or adiposity-related health issues deserve not to be identified as having a disease simply because of their size.
If we all follow the science, we might yet turn a common understanding into more equitable outcomes for all.
Dr. Ramos Salas and Mr. Hussey are research consultants for Replica Communications, Hamilton, Ont. She disclosed ties with the Canadian Institutes of Health Research, European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, The Obesity Society, World Obesity, and the World Health Organization. Mr. Hussey disclosed ties with the European Association for the Study of Obesity, Novo Nordisk, Obesity Canada, and the World Health Organization (Nutrition and Food Safety).
A version of this article originally appeared on Medscape.com.