Psychosocial Support and Resources for Pediatric Patients with Variations in Sex Characteristics Associated with Congenital Adrenal Hyperplasia: A Retrospective Chart Review
Tess Jewell, BA1, Shannon Cannon, MD1, Kelsey Lewis, PhD2, Walid A. Farhat, MD1, Vinaya Bhatia, MD1, Jennifer Rehm, MD1.
1University of Wisconsin School of Medicine and Public Health, Madison, WI, USA, 2University at Buffalo, Buffalo, NY, USA.
BACKGROUND: Variations in sex characteristics (VSC) occur when an individual’s sex chromosomes, gonads, and/or genitalia do not align with societal expectations of male or female bodies. Patients with VSC may face stigma and experience stress related to their condition. Parents of children with VSC have reported psychological distress and illness uncertainty. Congenital adrenal hyperplasia (CAH) is a common cause of VSC in 46 XX patients. Managing patients with VSC requires a multidisciplinary team, including psychological care, and access to educational and psychosocial resources. This study sought to characterize access and utilization of these resources among pediatric patients and their families.
METHODS: A retrospective chart review was conducted at a large academic medical center focusing on pediatric patients with VSC secondary to CAH who received care between 2000-2020. Study design involved community partners with lived VSC experience. Measures of psychosocial support included frequency of requests, referrals, and appointments with psychologists, social workers, child life specialists, and chaplains. Resources included materials documented in the chart as being provided or recommended to patients and families as a source of support or information. Questions asked by patients and families documented in clinic notes, telephone encounters, and portal messages were recorded and key themes identified. Data analysis utilized descriptive statistics. Research supported in part by NIH grant number K12HD055894.
RESULTS: Thirty-seven patients were identified. CAH was diagnosed between day 1 of life to 17 years old. Medical interventions were performed in 97% of patients, and 49% underwent surgical interventions related to CAH. The most common documented source of psychosocial support was child life specialists (32%), helping during lab draws, surgical preparation, hospitalization, imaging, and clinic visits. Psychological care referral was made for 19% of patients with 86% of those patients documented as receiving that care. Psychological care referral related to a child’s CAH was made for 16% of parents, and 67% were documented to have received this. Social work involvement was documented in 11% of patients by identifying or providing resources to patients and families and providing psychotherapy in one case. Chaplains were documented as providing support to families during hospitalization (5%). Participation in peer support activities was documented as discussed with 19% of patients. A wide range of questions from patients and their families related to CAH were documented and they were provided with resources including medical management (76%), general CAH information (22%), and gender-identity related resources (8%).
CONCLUSIONS: This study highlights the limited accessibility and utilization of psychosocial support, as well as inconsistencies in the resources provided for patients with CAH-related VSC and their families. Improved access to psychosocial care and quality information sources is crucial for patients and their families. Consistent documentation of internal and external sources of support utilized by patients and families could be helpful in steering recommendations for future patients. Developing multidisciplinary teams that provide comprehensive care for patients with VSC and improving the quality and accessibility of resources would significantly benefit this patient population.
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