Endocrine Abstracts

Prader-Willi syndrome (PWS) is a complex neurodevelopmental genetic disorder with a specific trajectory leading to early obesity with hyperphagia, psychiatric disturbances, endocrine and metabolic disorder. Global incidence is approximately 1 in 20,000 births in Europe. PWS is usually diagnosed early in life and then managed by pediatric teams. Transition is defined as "a process of organized and coordinated change of adolescents and young adults with a chronic medical condition from a pediatric system of care to the adult system of care". Transition is a process, whereas ‘transfer’ is the actual moment of the first appointment at adult care. A European endocrinologist expert group examined in 2015 the gap in metabolic and endocrine care of patients during transition (2). They highlighted the necessity of multidisciplinary collaboration across health sectors for endocrine diseases, the need for pediatric and adult endocrinologists to work together, early involvement of adolescents in their disease, and also of parents in the transition process. The transition of patients with PWS from adolescence to adult life is particularly challenging for medical care because of multiple comorbidities and specific skills required for the medical team but also management of behavioral problems that may preclude socialization. This period of profound changes is thus prone to disruptions, the main risks being the worsening of the medical situation and losing the follow-up of patients. The MTG5 “Growth and obesity” of the EndoERN organized a webinar on 16th of November 2021 and convened experts of the disease to address the transition of care in PWS. Speakers brought their knowledge of this peculiar period on psychiatric and endocrinological aspects but also examined the complementary points of view as pediatricians and adult specialists. The experience of parents and patients was also presented. In this presentation I will show the adaptations our team made based on our long term experience to optimize the transition of care of adolescents to young adults with PWS and the challenges to face to give them the best chance of having a satisfactory quality of life.