Grande L, Flewelling K, De JS et al: Satisfaction and shared decision making in a multidisciplinary care clinic for patients with differences in sex development. Urol Pract 2021; 8: 682.

Introduction

Patients with differences in sex development (DSD) represent a complex pediatric population with varying psychosocial and medical needs.¹ Patients and families face difficult medical decisions related to early gender assignment and hormonal treatments during puberty, and are subject to considerable ethical and legal controversies surrounding surgical interventions.² Given these challenges and complexities, the current recommendation from the medical community is to utilize a multidisciplinary care (MDC) clinic setting in the care of patients with DSD.³ MDC clinics allow for coordination of care through a consolidation of resources, and they facilitate joint collaboration between health care providers, patients and families, a collaboration that lends to a shared decision making process. Unfortunately, to date, there are few published data on the satisfaction with health care delivery that families of patients with DSD experience in a pediatric MDC clinic, nor is there information on the level of shared decision making involved in discussions with urologists during the planning stages of care.

Methods

Parents/guardians and young adult patients seen in a multidisciplinary DSD clinic were asked to participate in an anonymous online survey. Questionnaires included self-reported demographic and medical information, overall satisfaction with health care delivery in the MDC DSD clinic (Patient Satisfaction Questionnaire-Short Form) and involvement in the shared decision making process with the pediatric urologist during their most recent clinic visit (Shared Decision Making Questionnaire). Welch’s t-test was used to compare mean survey scores to historical and contemporary control populations.

Results

A total of 22 guardians and 1 young adult patient completed surveys. Table 1 contains detailed participant demographic information. Median patient age was 36 months. Patient diagnoses were diverse: the most common self-reported patient diagnosis was 46, XY DSD (39.3%) with the remaining participants reporting diagnosis of congenital adrenal hyperplasia (CAH); 46, XX DSD; 45, XO/46 XY, complete androgen insensitivity syndrome (CAIS); partial androgen insensitivity syndrome (PAIS); hypospadias and a medical condition that was unknown to the respondent. At the time of their clinic visit, 7 patients had undergone surgery. Mean satisfaction scores were higher than a primary care population and comparable to patients and patients’ caregivers with chronic medical conditions (table 2). The mean shared decision making score was well above adult populations and similar to caregiver reports in pediatric outpatient clinics (table 3).

Discussion

The current findings suggest that families followed in a pediatric, multidisciplinary DSD clinic are very satisfied with the quality of care they receive and appear to feel personally invested in the decision making process.⁴ This is notable given the complexity of care and controversy surrounding medical decision making in the DSD population. Current consensus guidelines recommend building open and honest communication, respecting patient and family values and wishes, and sharing medical information in a way that is sensitive to each child’s development.³ Further, this approach is thought to be best facilitated by a multidisciplinary approach to care, involving team-based collaboration across multiple disciplines such as urology, endocrinology, gynecology, nursing, psychology, social work and genetic counseling. This is the first study, to our knowledge, to review shared decision making and satisfaction with MDC in the DSD population.

The current study should be considered in light of several limitations, notably assessment of caregiver rather than patient satisfaction and family self-disclosure of patients’ medical diagnosis. Generalizability of the current findings could be limited; the current DSD MDC clinic is a long-standing clinic with the inclusion of patient advocates and a robust psychosocial support team. Moreover, the sample size of the current study precluded our ability to differentiate between DSD diagnoses. Despite these limitations, this study has several strengths, including utilizing validated, widely used assessments in pediatric populations and recruiting patients with a range of DSD medical diagnoses. Future research should assess satisfaction and shared decision making among adolescents and adults with DSD, and compare findings to patients receiving care through stand-alone medical providers.