title: Appendix - The North American Disorders/Differences of Sex Development (DSD) Clinician Survey: Changes in Recommendations for the Clinical Management of 46,XY Disorders of Sex Development
title: N Amer DSD Clin Survey: 46,XY Care
titleType: AlternativeTitle
Creators: name: Sorouri Khorashad, Behzad
Publisher: name: My University
Year: 2022
Subjects: subject: Partial Androgen Insensitivity Syndrome (PAIS), Micropenis, penile ablation, differences of sex development, gender assignment, clinical practice guidelines
subject: Pediatrics
subject: Health Sciences

description: Background. Clinical management in patients with 46,XY Disorders/Differences of Sex Development (DSD) remains unsettled and controversial. Aim. The North American Clinician Survey is to investigate how the clinical management of chromosomally male newborns with DSD has changed in the last two decades among a large group of experts. Methods. Active members of the (Lawson Wilkins) Pediatric Endocrine Society (PES) and the Societies for Pediatric Urology (SPU) were invited to respond to a web-based survey at three different time points: 2003-04 (T1), 2010-11 (T2) and 2019-20 (T3). Data from 429 participants in T1, 435 in T2, and 264 in T3 were included in this study. The participants were presented with three clinical case scenarios and asked for recommendations for the clinical management of each case. The scenarios included newborns with Micropenis (Primary Testicular Failure), Partial Androgen Insensitivity Syndrome (PAIS), and iatrogenic penile ablation. Outcomes. The main outcome measures included assigning gender of rearing at birth, shared decision-making, the timing of genital/gonadal surgery, and the timing of disclosure of medical and surgical history details to the patient. Results. In all cases, recommending girl as a gender of rearing declined in all case scenarios, and most recommended the newborn to be reared as boy. A significant rise in recommending boy was detected in newborns with penile ablation. Although at the first timepoint, most recommended that only parents should be included in the decision-making, there was a significant rise in including the patient in the decision-making process. Recommendations on the timing of surgery varied based on the gender of the patient and type of surgery. Lastly, independent of the condition and gender assigned, most participants recommended an early disclosure of medical and surgical details. Strengths and Limitations. This is the first study of its kind that monitors the clinical recommendations of physicians in the span of two decades. One crucial limitation of this study is whether responses to vignette-based clinician surveys do accurately reflect what they do in real-life setting. Conclusion. Although there were considerable variations in recommendations, most experts do not follow the optimal gender policy. There was a growing trend toward postponing surgical interventions, including patients in the decision-making process and early disclosure of medical and surgical histories. While the benefits of early disclosure have been emphasized, it is unclear whether patients will benefit or be harmed by postponing the surgeries for genital reconstruction.