Endocrine Abstracts

JOINT2671

Introduction: Congenital adrenal hyperplasia (CAH) and differences in sex development (DSD) are complex medical conditions requiring lifelong care involving multiple medical specialties at various stages of life. Transitional care refers to the smooth coordinated transfer of health care from more family-centered paediatric services to more individual-centred adult-care services, and involves meetings between paediatric and adult health care providers, patients and parents. Age of transition can vary from 14-21 years, based on the setting, health care services and socio-cultural aspects.

Method: This cross-sectional study assessed the recently established transitional process for patients above 16 years with CAH and DSD at an university pediatric endocrine unit. The transition process is currently coordinated by clinical-staff, and patients have been educated about its importance by the primary-clinician. Patient data were obtained from the unit-based patient registry (ethics-approval-EC–18-092), and follow-up phone call. Descriptive analyses were performed to determine patient characteristics and outcomes.

Results: The study involved 38 patients aged 16-26 years, with DSD (n = 15,39.4%) and CAH (n = 23, 60.6%), of whom 21(55.6%) were females, and 17(44.7%) were males. The majority (n = 32,84.21%) resided outside the district where the centre was located. Currently, 15 patients (39.5%, mean age:22.2years) have been transferred to adult-care while 17 (44.7%, mean age:17.2y) are currently undergoing the transitional process, and 6 (15.8 %, mean age:17y) are yet to start the transitional process. Among the 15 transferred to adult care, three(20%) hadn’t yet engaged with adult-care services due to personal reasons and anticipatory anxiety, while another three(20%), who requested transfer to local hospitals (without specialized endocrine services) have returned due to lack of medication. Among those undergoing transition(n = 17), seven-patients(41.2%) didn’t initially turn up for their scheduled transition meetings citing personal reasons, leading to difficulties in rescheduling. Most patients undergoing transitional process or yet to start the process have requested to remain under paediatric care till completion of major school exams.

Conclusion: Patients appear to be experiencing anxiety/reluctance about transitioning to adult care, despite its importance. The process is also hindered by logistical issues with rescheduling and coordination of joint care meetings in low resource settings, and absence of specialized services and medicine in local hospitals. However, ways of overcoming the challenges identified are important for successful transition which is crucial for optimizing long-term patient care.