Abstract
Introduction: There is no cure for motor neurone disease (MND). Until we develop one, the best available evidence indicates that people living with MND (plwMND) should receive integrated, person-centred care (PCC), and access to specialised MND multidisciplinary clinics (MDC). These approaches to care improve the quality of life, health outcomes, care experiences, and decision-making for plwMND and their families.
Background: In Australia, the implementation of age-based funding models such as My Aged Care and the National Disability Insurance Scheme has impacted the ability to provide connected and coordinated care for plwMND across care sectors. To combat this, we developed and ran a multidisciplinary clinic for plwMND (the MND-MDC) on the Central Coast, New South Wales, Australia, and explored the barriers and enablers to implementation.
Methods: Qualitative methods informed the implementation evaluation using semi-structured interviews with plwMND(n=4), family carers(n=2), health(n=6) and social care providers(n=2) participating in the clinic. A key stakeholder advisory group provided guidance and feedback on various components of the evaluation. An inductive thematic analysis identified clinic outcomes. A deductive analysis using the Theoretical Domains Framework (TDF) systematically identified barriers and enablers to MDC adoption, delivery, and sustainability. The TDF was mapped to the COM-B system to understand Capabilities, Opportunities, and Motivations for Behaviour, and to suggest appropriate behaviour change interventions for future use.
Results: The MND-MDC was deemed appropriate and acceptable to provide equitable access to a specialist multidisciplinary team that was ‘closer to home’ and adopted a person-centred approach. Participants reported that this approach connected plwMND and their families to health and social care organisations, who supported integrated care delivery. Unexpected positive outcomes of the MND-MDC included ongoing goodwill of the team, valuable contribution to filling service gaps, including via ‘workarounds’, and the creation of stronger connections between plwMND and families.
Relevant to the TDF, key enablers influencing the MND-MDC implementation were: staff clinical expertise in MND management (Skills); the ability of the MND-MDC team to work interprofessionaly and transdisciplinary (Skills, Social and professional role and identity); trust, inclusivity and approachability of staff (Social influences); access to an administration team, a centrally located clinic space (Environmental context and resources); and the strong belief that the MND-MDC optimised care and treatment (Beliefs about consequences).
Barriers to implementation included: a lack of funding for staff time, multisector challenges, and organisational boundaries (Environmental context & resources); limited representation of palliative and respiratory specialist teams and the absence of gastroenterology team (Skills); and poor expectations of the MND-MDC ability to share information and network with services (Beliefs about consequences).
Conclusion: The commitment to providing equitable access to an MND-MDC in a regional area is crucial to optimise health outcomes and care experiences for plwMND and their families. Using our findings, we aim to break down complex organisational boundaries, inform local solutions and strategies to improve clinic efficiency, support collaborative practices and build stronger partnerships, critical to developing and integrating the MND-MDC and improving care coordination. Securing financial support and local health district ‘buy in’ will be necessary to ensure clinic sustainability.