The Health Care of Adults with Differences in Sex Development or Intersex Traits Is Changing: Time to Prepare Clinicians and Health Systems
Abstract
Historically, the majority of differences in sex development or intersex trait (dsd/I)-specific medical care has been provided by pediatric clinicians, leading to a dearth of adult clinicians qualified to care for this vulnerable population, and pediatricians reticent to transition patients to adult care. Recent changes in routine care of children and infants with dsd/I, including reconsidering the role of early genital surgeries, highlight the critical need to address the gaps in adult dsd/I health care. In this perspective, we describe three key educational and research approaches that can be implemented to build competency to care for adults with dsd/I and improve care across the lifespan.
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References
1. Fausto-Sterling A: Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books, 2000.
2. Blackless M, Charuvastra A, Derryck A, et al.: How sexually dimorphic are we? Review and synthesis. Am J Hum Biol 2000;12:151–166.
3. Thyen U, Lanz K, Holterhus PM, Hiort O: Epidemiology and initial management of ambiguous genitalia at birth in Germany. Horm Res 2006;66:195–203.
4. Lee PA, Houk CP, Ahmed SF, et al.: Consensus statement on management of intersex disorders. International Consensus Conference on Intersex. Pediatrics 2006;118:e488–e500.
5. Krege S, Eckoldt F, Richter-Unruh A, et al.: Variations of sex development: The first German interdisciplinary consensus paper. J Pediatr Urol 2019;15:114–123.
6. Creighton S, Chernausek SD, Romao R, et al.: Timing and nature of reconstructive surgery for disorders of sex development—introduction. J Pediatr Urol 2012;8:602–610.
7. Diamond M: Clinical implications of the organizational and activational effects of hormones. Horm Behav 2009;55:621–632.
8. Cools M, Nordenström A, Robeva R, et al.: Caring for individuals with a difference of sex development (DSD): A consensus statement. Nat Rev Endocrinol 2018;14:415–429.
9. Zeeman L, Aranda K: A systematic review of the health and healthcare inequalities for people with intersex variance. Int J Environ Res Public Health 2020;17:6533.
10. Meoded-Danon L, Yanay N: Intersexuality: On secret bodies and secrecy. Stud Gend Sex 2016;17:57–72.
11. Davis G: Contesting Intersex: The Dubious Diagnosis. New York: NYU Press, 2015.
12. Office of the United Nations High Commissioner for Human Rights: Born Free and Equal: Sexual Orientation, Gender Identity and Sex Characteristics in International Human Rights Law, 2nd ed. New York and Geneva, United Nations: Office of the United Nations High Commissioner for Human Rights, 2019.
13. Massachusetts Medical Society: Massachusetts Medical Society Announces Policies on Opioid Use Disorder, Intersex Children and E-cigarettes. Waltham, MA: Massachusetts Medical Society, 2019.
14. Ann & Robert H. Lurie Children's Hospital of Chicago: Intersex Care at Lurie Children's and Our Sex Development Clinic. 2020. Available at https://www.luriechildrens.org/en/blog/intersex-care-at-lurie-childrens-and-our-sex-development-clinic Accessed August 27, 2020.
15. The 19th. Boston Children's Hospital will no longer perform two types of intersex surgery on children. Austin, Texas: The 19th, 2020. Available at https://19thnews.org/2020/10/boston-childrens-hospital-will-no-longer-perform-two-types-of-intersex-surgery-on-children Accessed October 21, 2020.
16. Schober J, Nordenström A, Hoebeke P, et al.: Disorders of sex development: Summaries of long-term outcome studies. J Pediatr Urol 2012;8:616–623.
17. Hewitt J, Zacharin M: Hormone replacement in disorders of sex development: Current thinking. Best Pract Res Clin Endocrinol Metab 2015;29:437–447.
18. Dietrich JE, Millar DM, Quint EH: Non-obstructive müllerian anomalies. J Pediatr Adolesc Gynecol 2014;27:386–395.
19. Mazen I, Mekkawy M, Kamel A, et al.: Advances in genomic diagnosis of a large cohort of Egyptian patients with disorders of sex development. Am J Med Genet A 2021;185:1666–1677.
20. Bertelloni S, Dati E, Baroncelli GI, Hiort O: Hormonal management of complete androgen insensitivity syndrome from adolescence onward. Horm Res Paediatr 2011;76:428–433.
21. Byne W, Karasic DH, Coleman E, et al.: Assessment and treatment of gender dysphoria and gender variant patients: A primer for psychiatrists. Am J Psychiatry 2018;175:1046.
22. Lee PA, Nordenström A, Houk CP, et al.: Global disorders of sex development update since 2006: Perceptions, approach and care. Horm Res Paediatr 2016;85:158–180.
23. Rosenwohl-Mack A, Tamar-Mattis S, Baratz AB, et al.: A national study on the physical and mental health of intersex adults in the U.S. PLoS One 2020;15:e0240088.
24. Hollenbach AD, Eckstrand KL, Dreger A, eds.: Implementing Curricular and Institutional Climate Changes to Improve Health Care for Individuals Who Are LGBT, Gender Nonconforming, or Born with DSD: A Resource for Medical Educators. Washington, DC: Association of American Medical Colleges, 2014. Available at https://members.aamc.org/eweb/upload/Executive%20LGBT%20FINAL.pdf Accessed October 10, 2020.
25. Creighton S, Alderson J, Brown S, Minto CL: Medical photography: Ethics, consent and the intersex patient. BJU Int 2002;89:67–72.
26. Porter JS, Wesley KM, Zhao MS, et al.: Pediatric to adult care transition: Perspectives of young adults with sickle cell disease. J Pediatr Psychol 2017;142:1016–1027.
27. Singh J, Towns S, Jayasuriya G, et al.: Transition to adult care in cystic fibrosis: The challenges and the structure. Paediatr Respir Rev 2020;S1526-0542:30114–30117.
28. Cahill S, Makadon H: Sexual orientation and gender identity data collection in clinical settings and in electronic health records: A key to ending LGBT health disparities. LGBT Health 2014;1:34–41.
29. Morgan RE, Dragon C, Daus G, et al.: Updates on Terminology of Sexual Orientation and Gender Identity Survey Measures. FCSM 20-03. Federal Committee on Statistical Methodology, 2020.
30. Burgess C, Kauth MR, Klemt C, et al.: Evolving sex and gender in electronic health records. Fed Pract 2019;36:271–277.
31. Lau F, Antonio M, Davison K, et al.: A rapid review of gender, sex, and sexual orientation documentation in electronic health records. J Am Med Inform Assoc 2020;27:1774–1783.
32. Baker KE, Streed CG Jr, Durso LE: Ensuring that LGBTQI+ people count—collecting data on sexual orientation, gender identity, and intersex status. New Engl J Med 2021;384:1184–1186.
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Copyright 2021, Mary Ann Liebert, Inc., publishers.
History
Published in print: October 2021
Published online: 28 September 2021
Published ahead of print: 30 June 2021
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Authors' Contributions
F.G. led the literature review, led the original draft writing, and participated in the draft review and editing. K.B.D. participated in the original draft writing and literature review, and contributed to the draft review and editing. J.K. and C.G.S. Jr. contributed to the draft review and editing. All coauthors reviewed and approved the article before submission.
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No competing financial interests exist.
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No funding was received for this article.
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