Treatment Goals of Adolescents and Young Adults for Gender Dysphoria.

OBJECTIVES: With this study, we aim to describe transgender and nonbinary adolescents and young adults' stated gender treatment goals at the time of initial presentation to medical care. METHODS: This is a retrospective chart review of transgender and nonbinary patients aged 10 to 24 seeking specific gender-affirming health care. Charts were reviewed for specifically stated goals of future hormonal or surgical care for gender and analyzed by the experienced or asserted gender (man, woman, nonbinary, eclectic) of participants. RESULTS: In total, 176 patient encounters were reviewed. Of these, 71% were assigned female at birth. Most participants experienced a masculine gender (46.6%), identified as white (65.3%), and had private health insurance (73.3%). Most patients had a goal of initiating hormone therapy (97.4%) and eventual surgery (87.1%). Of those who had a surgical goal, most (87.5%) desired surgery of the chest or breast, and a minority (29.3%) desired eventual genital surgery. The second-largest gender group was patients who either declined to state an asserted gender or felt unable to describe their gender experience (eclectic, 23.3%), and this group's treatment goals did not mirror any other group's goals. CONCLUSIONS: At the time of initial presentation to medical care for gender-specific needs, many adolescents are capable of asserting specific treatment goals. Most do not desire genital surgery. A large minority of patients decline to state an asserted gender or feel unable to assert a specific gender, and this population appears distinct from more traditional genders in terms of treatment goals.

A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes.

Introduction: Individuals with Ehlers-Danlos syndromes (EDS) often have complex and multi-faceted symptoms across the lifespan. Pain and the related symptoms of fatigue and sleep disorders are common. The objective of this qualitative study was to understand how participants manage their pain and related symptoms. Methods: The design was a qualitative thematic content analysis. Twenty-eight interviews were conducted to collect data from individuals who were participants in a prior quantitative longitudinal study. A semi-structured interview guide was designed to focus on and understand the trajectory of pain, sleep, fatigue, and general function. The interview continued with questions about coping mechanisms and obstacles to maintaining a sense of well-being. Results: Symptoms reported by participants were widespread and often interwoven. Pain was universal and often resulted in fatigue and disordered sleep which impacted physical function. Most participants reported that their symptoms worsened over time. Participants reported a wide range of effective interventions and most reported developing self-care strategies to adapt to their disabilities/limitations. Solutions included complementary interventions discovered when conventional medicine was unsuccessful. Very few relied on a "system" of health care and instead developed their own strategies to adapt to their disabilities/limitations. Discussion: EDS symptoms are often debilitating, and their progression is unknown. For most participants, symptoms worsened over the time. Even though participants in our study, by experience, were self-reliant, the importance of knowledgeable medical providers to help guide self-care should be emphasized.