Background: Neuromuscular diseases (NMD) are progressive, leading to reduced quality of life and life expectancy, while requiring long-term caregiving. As patients age, caregivers face increasing demands, often resulting in significant caregiver burden. Treatment and care are complex, and a coordinated, family-centred approach is indicated. The current care situation for individuals with NMD and their families in Switzerland is poorly understood, and there is no standard for NMD care management available.
Objective: The proposed study aims to assess the current care practices for individuals with NMD in Switzerland, identifying unmet needs and challenges faced by patients, families, and health care providers. Based on these findings, a care management model will be developed, implemented, and evaluated to enhance support structures, strengthen specialist health centres, and improve overall health care outcomes for affected individuals and their families.
Methods: We planned a three-phase participatory mixed-methods study design. First, qualitative descriptive and quantitative survey data will be used to determine the current state of care practices. Then, a care management model and training program are co-developed based on these insights. Last, the care management service is implemented and evaluated in pilot specialist health centers. The protocol is published after the completion of data collection (“Data Existing” IRRID) and is intended to serve as guidance for similar projects in the future.
Results: Expected outcomes include enhanced patient and caregiver satisfaction, improved quality of life and self-efficacy, reduced caregiver burden and hospitalizations, better inter-professional collaboration, and reduced healthcare costs through more coordinated, family-centred care.
Conclusions: Evidence-based and family-centred care management is expected to strengthen the support system for patients living with these rare but severe conditions and to create a sustainable care situation despite limited financial resources in the future. Expected outcomes include improved quality of life, self-efficacy and family functioning and reduced caregiver burden and health care costs.
