Integration of child life services in the delivery of multi-disciplinary differences in Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) care

• Published in: Journal of pediatric urology 2022-10, Vol.18 (5), p.612.e1-612.e6
• Main Authors: Cheng, Julie W., McCauley, Elizabeth, Nicassio, Lauren N., Fechner, Patricia Y., Amies Oelschlager, Anne-Marie E., Adam, Margaret P., Fisher, Christina, Wetzler, Joanne, Kinsinger, Rachel, Nelson, Paige, McCune, Nancy, Cain, Mark P., Shnorhavorian, Margarett
• Format: Article
• Language: English
• Subjects: Adrenal Hyperplasia, Congenital - diagnosis; Adrenal Hyperplasia, Congenital - psychology; Adrenal Hyperplasia, Congenital - therapy; Anesthesia; Child; Child development; Congenital adrenal hyperplasia; Disorders of sex development; Disorders of Sex Development - diagnosis; Disorders of Sex Development - psychology; Disorders of Sex Development - therapy; Humans; Physical Examination; Quality improvement; Sexual Development
• ISSN: 1477-5131; 1873-4898
• DOI: 10.1016/j.jpurol.2022.08.001

Multiple studies have demonstrated the benefit of incorporating certified child life specialist (CCLS) services in various aspects of pediatric care. Although the significance of psychosocial support of patients with Disorders of Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) is increasingly recognized, the involvement of CCLS services into the DSD and CAH multidisciplinary care model has yet to be described. To evaluate the feasibility, acceptability, and patient and family experience of routinely incorporating CCLS services into the multidisciplinary DSD and CAH care model. As part of a quality improvement initiative, CCLS services were routinely incorporated in the multidisciplinary DSD and CAH clinics at our institution. Encounters for patients seen in clinic between July 2018 through October 2019 were reviewed for demographic information, DSD diagnosis classification, CCLS documentation, and whether an exam under anesthesia (EUA) was required due to an incomplete clinical exam. CCLS documentation was reviewed for assessments, interventions, whether patients tolerated their physical exams, time of CCLS services, and additional CCLS support beyond the physical exam. All patients were limited to one physical exam per clinic visit. Out of the 45 encounters with CCLS involvement, 42 (93.3%) exams were well-tolerated. CCLS assessments considered patient development, communication considerations, temperament, medical stressors, coping preferences, and patient preferences for activities and distractions. Interventions included preparing patients for their physical exams, encouragement before and during exams, addressing patient stressors, distractions and coping mechanisms, and advocating for the patient. No patients required an EUA. The CCLS aimed to provide families with a sense of control during clinic visits and teach them to advocate for themselves. The CCLS helped prepare and distract patients for their clinic visit and addressed the sensitive nature of the physical exam by focusing on the emotional and development needs of patients. CCLS contributions to a positive patient experience are consistent with multiple studies demonstrating the benefit of CCLS services for pediatric care. This quality improvement initiative ultimately helped to create a positive experience for patients and families. This study demonstrates the feasibility, acceptability, and positive impact of CCLS services in the delivery of patient and family-centered car