Differences of sex development (DSD) are heterogeneous conditions that involve discordance between genetic, gonadal, or phenotypic sex evident at birth or through atypical development during puberty. DSD pose unique clinical management and psychosocial challenges, including impairments to fertility, sexual and urological function, atypical genitalia, increased incidence of gender identity incongruent with gender of rearing, and at times, controversies about gonadectomy and/or genital surgery, which are often performed in infancy before individuals with DSD can participate in decision-making or provide consent. Individuals with DSD are at risk for mental health problems, including traumatic stress symptoms, anxiety, depression, and suicidality, but little is known about relationships between medical care experiences and mental health. Although interdisciplinary care is currently recommended for DSD, medical care remains variable and controversial, with a paucity of data to guide empirically supported medical and psychosocial care practices. Some individuals with DSD report devastating experiences related to their medical care including distress over a lack of autonomy to make critical decisions about medical interventions performed for primarily psychosocial and non- medical purposes (e.g., genital/gender-typifying surgeries performed in infancy) and frequent genital medical exams and photography, often performed without clearly communicated rationales. A significant barrier to understanding medical care practices, experiences, impacts, and patient needs is the lack of any patient- centered, validated instruments specific to the DSD population to assess these issues and their relationships with mental health, including traumatic stress symptoms. Using a community-based participatory research approach and building on the foundation of our prior DSD research, we will develop, pilot, and establish initial psychometrics for a novel youth self-report instrument which will assess DSD care-related preferences, needs, experiences, and impacts on mental health among youth with DSD (ages 11-18 years).
Specific aims i nclude: 1) Convening a diverse Stakeholder Advisory Board consisting of youth with DSD, caregivers of youth with DSD, adults with DSD, and DSD clinicians representing a range of specialties to identify key domains of experiences and needs and item content identification to evaluate medical care experiences and their impacts on well-being; 2) Refining items for comprehensibility, content validity, acceptability/cultural competence, and coverage of key experiences through iterative cognitive interviewing; and 3) Evaluating initial psychometric properties of the developed instrument, including test-retest reliability and convergent and criterion validity. Our overarching objective is to expand access to personalized care in an underserved, vulnerable pediatric population, youth with DSD, by identifying medical care practices associated with positive and poor adjustment and informing tailored interventions to promote well-being.
Youth with differences/disorders of sex development (DSD) often experience stressful medical care experiences linked to mental health risks, including traumatic stress, anxiety, depression, and suicidality, although little is known about how diverse medical care experiences differentially impact mental health and well-being. A significant barrier to understanding youth medical care experiences, needs, preferences, and impacts is the lack of a validated patient-centered, self-report instrument specific to the diverse DSD youth population to assess these issues. The proposed research employs a community-based participatory approach to develop and evaluate initial psychometric properties of an instrument assessing medical care experiences, unmet care needs and preferences, and impacts on mental health, including traumatic stress, in youth with DSD.
