Background: Despite advances in genetic diagnosis and surgical technique, and guidance from the Consensus Statement on Intersex Disorders, aspects of clinical management in disorders/differences of sex development (DSD) remain unsettled. Actively debated decision points include gender of rearing in specific syndromes, genital surgery prior to the patient developing the capacity to provide assent, and uncertainty over how and when to best educate young patients about diagnostic and medical management history details.
Objective and hypotheses: To ascertain expert opinion and treatment recommendations regarding clinical management of children born with varying DSD.
Method: Pediatric endocrinologists (T1n=300; T2n=337) and urologists (T1n=132; T2n=118) were presented five case vignettes and asked for recommendations about gender of rearing, surgical decision-making, and disclosure regarding diagnostic and medical management history to paediatric patients. The web-based survey was administered three years before and four years following Consensus Statement publication. Clinical recommendations in each area are summarized on a case-by-case basis. Effects of physician characteristics (i.e., gender, age, experience, practice setting, subspecialty) and time (ie, pre- vs post-consensus) on clinical recommendations were assessed.
Results: Within specialty, substantial variability existed in gender of rearing recommendations and, similarly, for surgical and disclosure decisions. Speciality was inconsistently associated with recommendations. Differences by physician demographic characteristics emerged, but did not form a systematic pattern across vignettes.
Conclusion: Variability in clinical management recommendations, independent of case characteristics, is a cause for concern particularly for parents faced with contrasting recommendations. There is an acute need to account for variability in provider recommendations which may be untethered to evidence.
10 - 12 Sep 2016
European Society for Paediatric Endocrinology