DSD-Related Attitudes and Beliefs Held by Pediatric Endocrinologists and Urologists: Insights from the North American Disorders/Differences of Sex Development (DSD) Clinician Survey

Abstract

Background. In the absence of evidence-based clinical practice guidelines, clinical management in disorders/differences of sex development (DSD) may be influenced by clinicians’ attitudes and beliefs. Aim. Over the past two decades, the North American DSD Clinician Survey investigated the attitudes and beliefs regarding DSD regarding factors influencing patient quality of life. Methods. Active members of the (Lawson Wilkins) Pediatric Endocrine Society (PES) and the Societies for Pediatric Urology (SPU) were invited to complete a web-based survey at three timepoints: 2003-04 (n=412), 2010-11 (n=433) and 2020 (n=225). Participants ranked five factors affecting adult life satisfaction and then indicated their level of agreement with statements about various aspects of DSD. Outcomes. Main outcomes included prioritizing factors affecting patients’ adult life satisfaction and the level of agreement with each statement. Results. For most clinicians, a stable gender identity was considered as the most important general factor in influencing adult life satisfaction. The vast majority of clinicians, at all three timepoints, agreed that sociocultural background of the family are important determinants of how the patient with DSD will emotionally adapt; that incongruent gender identity is a cause of severe emotional distress; and that gender reconstructive surgery, if performed, should be delivered exclusively at centers of excellence. Further, the majority of clinicians across all three timepoints disagreed that raising a child with a 46,XY karyotype and either aphallia or cloacal exstrophy as a girl would result in the development of a gender identity identical to that of a physically typical female (46,XX). Respondents also disagreed with the suggestion of delaying hypospadias repair until the age of consent in a 46,XY child reared male. Survey timepoint, clinician sex, and specialty were shown to have significant effects on DSD-related attitudes and beliefs Conclusion. Overall, notable variability in the attitudes and beliefs among clinicians regarding predictors of positive quality of life outcomes in DSD was observed. Given the potential influence of these convictions on clinical management, variability unrelated to evidence presents a challenge to the standardization of healthcare services.