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Open access

Impact of transition on quality of life in patients with congenital adrenal hyperplasia diagnosed during childhood

Anne Bachelot, Magaly Vialon, Amandine Baptiste, Isabelle Tejedor, Caroline Elie, Michel Polak, Philippe Touraine, and the CRMERC study group

Background

Health-related quality of life (QoL) in adult patients with congenital adrenal hyperplasia (CAH) has been variously reported. However, there is no study evaluating the impact of transition on quality of life.

Methods

Adult patients with classic or non-classic CAH diagnosed during childhood CAH, born between 1970 and 1990, were recruited from the registers of Pediatric departments belonging to the French reference center for endocrine rare disease. Primary end point was the QoL (WHOQOL-BREF).

Results

Seventy-three patients were included in the study, among them 59/73 were transferred to adult endocrinologist by their pediatricians for transition. WHOQOL-BREF scores were similar between patients with or without transition to specialist adult services, except for environment dimension score, which was slightly higher in CAH patients without transition. However, CAH patients with a regular follow-up had a better physical health, psychological health and environment score and item global QoL than the group without regular follow-up after transition.

Conclusion

Regular medical follow-up in adulthood is associated with the transition between pediatric and adult care and is associated with better QoL in adults with CAH.

Open access

Transition of young adults with endocrine and metabolic diseases: the TRANSEND cohort

Enora Le Roux, Florence Menesguen, Isabelle Tejedor, Marc Popelier, Marine Halbron, Pauline Faucher, Sabine Malivoir, Graziella Pinto, Juliane Leger, Stephane Hatem, Michel Polak, Christine Poitou, and Philippe Touraine

Objective. The transition period between paediatric and adult medicine is associated with poor patient outcomes and important numbers of patients lost to follow up. Describe the cohort of patients in adult care who benefit from a new transition program based on case management approach.

Design. A longitudinal study was led since September 2016 in a French University Hospital.

Methods. Patients with any endocrine or metabolic disease diagnosed during childhood and transferred to adult care were included. The transition program includes 3 steps based on case management: liaising with paediatric services, personalising care pathways, liaising with structures outside hospital (General practitioner, educational and social sector).

Results. The cohort included 500 patients with malignant brain tumour (n=56 (11%)), obesity (n=55 (11%)), type 1 diabetes (n=54 (11%)), or other disease (n=335 (67%)). They were aged 19 in median at transfer, sex ratio: 0.5. At 21 months of follow-up in median, 439 (88%) have regular follow-up in or outside the hospital, 47 (9%) have irregular follow-up (absence at the last appointment or no appointment scheduled within the time recommended), 4 stopped care on the doctor's advice, 4 died, 3 moved, 3 refused care. The program involved 9,615 case management acts, 7% of patients required more than 50 acts. Patients who required most of support are usually affected by a neuro-cognitive disorder and have social issues.

Conclusions. The case manager addresses the complex needs of patients. With time, the cohort will provide unprecedented long-term results of patients with various conditions who went through transition.