Improving ALS Clinic Care Through Experience-Based Co-Design: A Participatory Action Research Study

Area of Science:

• Neurology
• Patient Care
• Health Services Research

Background:

• Multidisciplinary clinics (MDCs) are standard for amyotrophic lateral sclerosis (ALS) care.
• Understanding patient and care partner needs within MDCs is limited.
• Stakeholder engagement potential for strengthening ALS MDC services is underexplored.

Purpose of the Study:

• To explore experiences of people with ALS (pALS), care partners (cALS), and staff in an ALS MDC.
• To identify care gaps within the current ALS MDC model.
• To collaboratively develop strategies for improving ALS MDC care delivery.

Main Methods:

• Employed a six-stage experience-based co-design (EBCD) methodology.
• Conducted narrative interviews with pALS, cALS, and clinic staff.
• Utilized reflexive thematic analysis and iterative working groups for strategy development.

Main Results:

• Identified two key domains: communication/relationships and navigational/supportive resources.
• Communication and relationships between care partners (cALS) and staff were prioritized.
• Strategies included enhanced orientation, paced information delivery, and digital tools.

Conclusions:

• Iterative, curated education is crucial for pALS and cALS throughout the disease.
• Equitable stakeholder partnerships can lead to more patient-centered MDC care priorities.
• Collaborative strategy development offers a distinct approach to enhancing ALS care delivery.