Evaluating case management for caregivers of children with spinal muscular atrophy type I and II—an exploratory, controlled, mixed-methods trial

IntroductionSpinal muscular atrophy (SMA) is a rare neuromuscular disease requiring various clinical specialists and therapists to provide care. Due to the disease's dynamic nature and the long distances between specialized centers and local providers, integrating care between disciplines can be cha...

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Автори:	Jana Willems, Astrid Pechmann, Sabine Wider, Rita Ambs, Sylvia A. N. Meyer, Isabel Cascante, Joachim Sproß, Annette Mund, Erik Farin-Glattacker, Thorsten Langer
Формат:	Artigo
Мова:	Inglês
Опубліковано:	Frontiers Media S.A. 2023-09-01
Серія:	Frontiers in Pediatrics
Предмети:	case management rare diseases spinal muscular atrophy integrated care health-related quality of life
Онлайн доступ:	https://www.frontiersin.org/articles/10.3389/fped.2023.1212012/full
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