|Project description|| SMA is a serious, progressive and chronic disease. In medical management, much emphasis is put on medical treatment. From the patient perspective there is also a need for integrated psychosocial care.
The aim of this project is to develop a “roadmap” to psychosocial care for patients with SMA; based on both important medical events, development of the child and lifetime events.
In co-creation with patients and providers, using design based research methodogoly
1. A questionnaire about quality of psychosocial care for patients with SMA (QPC-SMA)
2. A roadmap for psychosocial care for patients with SMA consisting of (a) the needs from the patients’ perspective, (b) existing ways of psychosocial care for patients with SMA and (C) how to redesign the organization of care to integrate psychosocial care.