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

Veronika Waldboth1, Christina Schuler1, Raffaella Willmann2

  • 1Department of Health Sciences, Institute of Nursing, ZHAW Zurich University of Applied Sciences, Winterthur, Switzerland.

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Summary

This study developed and evaluated a family-centered care management model for individuals with neuromuscular diseases (NMDs) in Switzerland. The model aims to improve care coordination and quality of life for patients and their families.

Keywords:
Switzerlandcare managementcaregiver burdencaregiversmixed methodsneuromuscular diseasesquality of liferare diseasesstudy protocol

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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.