Optimising care pathways in Motor Neurone Disease for family carers: A realist evaluation.

Background: Motor Neurone Disease is an incurable disease, causing progressive muscle weakness including bulbar and respiratory dysfunction. Symptom burden has different trajectories for patients, but the majority require intensive life sustaining treatments i.e. nutritional and ventilation support. Care is provided by a variety of specialised and general health and social care professionals (HSCPs) through services in community, primary and secondary care.

Family carers (FCs) often undertake managerial care helping the person living with MND (plwMND) access and communicate with professionals, and seeking help when unexpected symptom changes occur. They report their ‘expert’ understanding of the needs of plwMND are not acknowledged, and their own needs are not assessed. Care pathways for MND differ greatly across the UK and seem to have differing outcomes for family carers, but it is unclear why this is.

Research question: What works, for whom, how, and in what circumstances for family carers and people living with MND as they navigate MND post-diagnosis care pathways? Aim: To provide a robust evidence base to optimise care pathways and outcomes for family carers of plwMND. Objectives: 1. Review and define the components of MND care pathways that characterise where and how FCs are integrated (WP1 and 2)

2. Understand perceptions of FCs, plwMND and HSCPs within current MND care pathways (WP2)

3. Understand outcomes experienced by FCs when seeking contact with, and engaging with, care delivery services and HSCPs (WP3)

4. Identify outcome measures valued by FCs of plwMND which could be used by service providers and in interventional research (WP4) 5. Develop a Programme Theory using evidence from WP1-4 and with stakeholders

6. Codesign with Expert by Practice Advisory Group evidence-based best practice guidance for commissioners and HSCPs on facilitating effective involvement with FCs as well as plwMND within care pathways (WP5)

7. Codesign materials with Experts by Experience Advisory Group to enable FCs’ empowered engagement with care pathways (WP5)

Methods: MND care pathways are a complex intervention with context sensitive outcomes. To understand intended and unintended outcomes for FCs we will use realist approaches across 5 work packages (WP). Phase 1 will develop Initial Programme Theory through a Rapid Realist Review with stakeholder input and an online survey to understand stakeholders experience of current MND care pathways (WP1&2).

Phase 2 will refine and test the initial programme theory through a realist evaluation of 5 MND care pathways through interviews and observations with FCs and HSCPs, and a scoping review of FCs outcome measures (WP3&4). In phase 3 we will co-design resources aimed at increasing FCs capability to manage contacts across care plans and professional perceptions of FCs as experts and care partners (WP5).

Timelines

Project to be delivered over 36 months: Phase 1 initial programme theory-months 0-12; Phase 2 realist evaluation and select outcome measures-months 12-28; Phase 3 co-produce key resources-months 28-36. Anticipated impact and dissemination

We will work with the MND Association to maximise awareness of the results. Impacts are likely to include an understanding of the characteristics of optimum care pathways that meet the needs of plwMND and family carers. This will lead to policy briefing and service and care delivery guidance and resources to increase FCs capability in managerial care.