Pathways to Care and Health Outcomes among DSD Patients
Project start and end dates: 9/8/2017 – 5/31/2023
This project will address three areas of importance in disorders of sex development (DSD) research: 1) patterns and guideline-concordance of care; 2) controversies in treatment; and 3) comorbidities and long-term health outcomes. There is disagreement on the optimal timing of sex assignment surgery in cases of atypical or ambiguous genitalia with some advocating early procedures and others arguing for a deferral. Another controversial issue is the common practice of a prophylactic gonadectomy for DSD patients whose karyotype includes Y-chromosome material (+Y DSD).
To study longitudinal patterns of care and health outcomes among individuals who were diagnosed with DSD.
Research Topics & Methods:
We will study data from DSD patients from three large integrated health care systems: Kaiser Permanente Southern California, Kaiser Permanente Georgia, and Kaiser Permanente Mid-Atlantic States. We will use relevant diagnostic and procedure codes to identify genital surgery and gonadectomies. Using these data we will assess the association between timing of gender assignment procedures and surgical complications, gender dysphoria, or other health problems later in life. We will also review pathology reports to estimate the frequency and determinants of “positive gonadectomy,” i.e., with evidence of malignant or premalignant lesions. We will then compare measures of health status of DSD patients to the corresponding measures among age- and membership matched non-DSD male and non-DSD female HCS enrollees (reference cohort). We will examine the incidence and prevalence of comorbidities and long-term health outcomes across age groups, categories of DSD conditions, and relative to the matched reference cohort.