Provider Education as the First Step in Changing the Culture Regarding Care of Neonates with Differences in Sexual Differentiation (DSD)

Background: Differences in sexual development (DSD) refers to conditions in which sex-related chromosomes, molecules, and/or internal organs are not readily classifiable into a male/female binary. Given the complex nature of DSD and potential of long-term psychosocial ramifications resulting from delayed diagnosis or poor communication, birth of a child with DSD constitutes a social emergency. While optimal care requires a multi-disciplinary DSD team, the first point of contact for majority of these patients and families are the healthcare providers in labor and delivery/nursery/NICU. For these front-line providers, management of DSD remains an unfamiliar and challenging scenario. Through creation of a simplified and innovative educational module, we sought to address this knowledge gap. The aim of this study was to evaluate effectiveness of the educational module in improving healthcare providers’ medical knowledge on DSD and comfort level in DSD-related communication.

Methods: At a large tertiary children’s hospital, a multidisciplinary DSD education planning committee including providers from our comprehensive DSD clinic (Endocrinology, Gynecology, Urology, Genetics, Pathology, Ethics) and Neonatology created a DSD educational module. The module focused on two key components of clinical care: 1) Medical knowledge–DSD physiology, timely recognition, and referral of DSD, sex assignment process and, 2) Appropriate communication– sensitivity and gender-neutral language. As an innovative strategy for better learner engagement, two brief animation videos demonstrating effective communication and the role of the DSD team were included. The target audience included faculty, trainees, advanced practice providers, NICU and labor and delivery nurses, and NICU social workers. Participants completed knowledge and comfort level assessment surveys before, immediately after and 3 months after the completion of the module. Comfort level was assessed using a Likert scale (1 to 5, strongly disagree to strongly agree). A pre-education score of >80% by Endocrinology faculty served as internal validation for questions on medical knowledge.

Results: 5 educational sessions have been completed; 91 providers completed the pre-survey. 46 providers completed the pre- and immediate post-education survey. Lack of medical knowledge (65%) and lack of awareness about sex assignment process (68%) emerged as major barriers to timely and mindful communication. Post-education, medical knowledge and comfort level improved in 80% and 76% of providers, respectively. Cumulative scores improved from mean 77% (SD 18) to mean 86% (SD 16) (p < 0.001) for medical knowledge and from mean 2.9 (SD 1.13) to mean 3.5 (SD 1.11) (p < 0.001) for comfort level– both with large effect size. Improvement in both scores was sustained in the 28% of providers completed the 3-month survey.

Conclusion: Educating healthcare providers on key aspects of DSD care addressed major barriers in care by improving medical knowledge and provider comfort level. This serves as a first step in initiating a cultural change and improving overall quality of care for neonates with DSD.