Developing, Implementing, and Evaluating a Care Management Model for Patients With Neuromuscular Diseases: Protocol...

Area of Science:

• Neurology
• Healthcare Management
• Public Health

Background:

• Neuromuscular diseases (NMDs) are progressive conditions impacting quality of life and requiring extensive caregiving.
• Caregiver burden increases as patients with NMDs age, necessitating specialized support.
• Current NMD care in Switzerland lacks standardization and a clear understanding of family needs.

Purpose of the Study:

• To assess existing NMD care practices in Switzerland and identify unmet needs.
• To develop and implement a novel care management model for NMD patients and families.
• To enhance support structures within specialized neuromuscular centers and improve health outcomes.

Main Methods:

• A 3-phase participatory mixed-methods study (Care-NMD-CH) was conducted.
• Phase 1 involved assessing current care practices using qualitative and quantitative data.
• Phase 2 focused on co-developing a care management model and training program, followed by implementation and evaluation in pilot centers.

Main Results:

• Ethics approval was obtained in 2020, with baseline data collected in 2021.
• The NMD care management model was developed and finalized in 2022.
• Implementation began in 2023 across 8 centers, with ongoing data collection for evaluation.

Conclusions:

• The study established an evidence-based, family-centered care management service for NMD patients.
• The project identified care gaps, developed a structured model with training, and evaluated its impact.
• Expected outcomes include improved care coordination, quality of life, self-efficacy, and reduced caregiver burden.