Abstract
Context. The transition period between pediatric and adult medicine is associated with poor patient outcomes and an important number of patients lost to follow up. Intervention exist but the few published randomized trials do not allow to study long-term patient outcomes nor intervention sustainability in time. Objective. Describe the cohort of patients in adult care who benefit from a new transition program based on case management approach, its activity and follow-up outcomes. Methods. A longitudinal study was led since September 2016 in adult services of endocrinology, nutrition and diabetology of a French University Hospital. Patients with any endocrine disease diagnosed during childhood and transferred to adult care were included. The care pathway for these patients was built in three steps. Step 1 is dedicated in liaising with pediatric services and patient to facilitate its first visit in adult care. Step 2 defines the care pathway in adult service based on the needs assessment realized by the coordinator upon the patient’s arrival in adult service. Step 3 focuses in liaising with structures outside hospital (GP, educational and social sector). Thorough the follow-up, the coordinator is identified as the key contact by the patients. Attendance to medical appointments, clinical, and social data are collected throughout patient follow-up. Results. Since 3 years, 500 patients benefited from the case management mainly for their obesity (n=91, 18%), type 1 diabetes (n=54, 11%), malignant brain tumor (n=68, 14%) or congenital hypopituitarism (n=42, 8%). They were aged 19 in median at transfer in adult care, sex ratio: 0,5, A large majority live in the parental home (409, 82%), 169 (34%) are university students, 130 (26%) are in high school, 90 (18%) are in medico-social institution. Patients who required most of support from the coordinator usually combine one (or more) somatic disease and either a neuro-cognitive disorder or a psychiatric disorder, they all have social difficulties. In patients with more than 3 months of follow-up (median: 18 months), 22/418 (5%) are out of follow-up. Concerning the patients for whom the follow-up is 36 months or more, the percentage of out of lollow-up is the same: 5% Conclusions. The case manager addresses the complex needs of diverse patients. With time, the cohort will provide unprecedented long-term results of patients with various conditions who went through transition.