Co-Designing a Care Coordination Intervention for People With Motor Neuron Disease: Protocol for a Mixed Methods...

Area of Science:

• Neurology
• Health Services Research
• Patient Care

Background:

• Motor neuron disease (MND), or amyotrophic lateral sclerosis (ALS), necessitates complex multidisciplinary care.
• Care coordination is often fragmented between specialist centers and local nonspecialist services in the UK.
• Existing care coordination for MND patients faces challenges in communication and resource accessibility.

Purpose of the Study:

• To address systemic gaps in MND care coordination.
• To develop a national overview of care coordination practices in England and Wales.
• To co-design a practical care coordination tool for MND patients and professionals.

Main Methods:

• A mixed-methods, multicenter study involving focus groups with patients, carers, and professionals.
• Focused ethnography in MND specialist centers to identify coordination barriers and facilitators.
• Co-design workshops to prioritize needs and develop the MND Together tool.

Main Results:

• The project is progressing with recruitment across multiple sites for Workstream 1.
• Data collection and analysis are underway for understanding care coordination challenges.
• The co-design phase for the MND Together tool is scheduled for completion in late 2027.

Conclusions:

• The MND Together project aims to enhance care quality by integrating specialist and community-based services.
• The developed tool seeks to ensure equitable access to expert MND support.
• Patient and public involvement is central to bridging care delivery gaps.