Addressing the psychosocial aspects of transition to adult care in patients with cystinosis.

ABSTRACT: Cystinosis is a rare autosomal-recessive lysosomal storage disease that progressively affects multiple organs beginning with the kidneys. Patients require lifelong multidisciplinary care for the management of kidney disease and progressive extra-renal manifestations, and thus, they are especially fragile and vulnerable during transition from pediatric to adult care. Previous documents have provided guidance to help the medical transition of these highly burdened patients. Patients and their families often experience great psychological distress and face significant social challenges; for these reasons, they often need help from psychologists, social workers, and other psychosocial professionals. Due to the rarity of the disease, most psychosocial professionals have no expertise in this dis

SUBMITTER: Stabouli S 

PROVIDER: S-EPMC11349776 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature