Abstract
Introduction: Person-centred care (PCC), integrated care and access to specialised motor neurone disease (MND) multidisciplinary clinics (MDC) are optimal approaches to the delivery of quality service for people living with MND (plwMND) for improved quality of life, health outcomes and care experiences. Since the changes in service delivery and aged-based funding models in Australia (My Aged Care and National Disability Insurance Scheme (NDIS)), collaborative interdisciplinary working practices, and connected and coordinated cross sector care for plwMND, have been impacted. The implementation evaluation of a privately run MND MDC on the Central Coast, New South Wales, Australia, explores the barriers and enablers to implementing a regional based MDC to support equitable, coordinated, and connected PCC across health, disability, and aged care sectors.
Methods: A mixed methods implementation evaluation informed by qualitative methods using semi-structured interviews with plwMND, family caregivers, health and social care providers attending the clinic. Underpinned by the Theoretical Domains Framework (TDF), we adopted an inductive analysis approach, particularly the initial coding of data, to ensure non-TDF-related factors are not overlooked, and nuance and context are not lost. Successful implementation strategies, and barriers and enablers influencing adoption, delivery, and sustainability of MND MDC, were systematically identified through the TDF. We focused on implementation outcomes based on Proctor’s framework, including acceptability, appropriateness, adaptability, fidelity, and feasibility.
Results: Preliminary results confirm the acceptability and appropriateness of providing equitable access to a specialist multidisciplinary team (MDT) that is ‘closer to home’ and adopts a person-centred approach to connect and support plwMND and their families within their local area. The MND MDC is held every 4 months in a private clinic, with no out-of-pocket expenses for the plwMND, and an option to attend via telehealth, as necessary. A case conference is conducted at the end of the clinic to discuss each plwMND, with palliative care and occasionally respiratory specialists attending via videoconferencing. Key enablers influencing the MND MDC implementation, relevant to the 14 domains of the TDF, are the multidisciplinary team expertise in MND management working together with MND NSW association and carers support (skills), strong clinical leadership, and understanding and cooperation within MDT (social/ professional role and identity), access to administration team, centrally located clinic space and technology (environmental context and resources), and the strong belief in providing a MND MDC to optimise care and treatment (belief about consequences). The barriers relate to lack of funding of MDT time, cross sector challenges and organisational boundaries (environmental context and resources), the limited representation of palliative and respiratory specialist teams and absence of gastroenterology team (skills), and limited understanding of optimal MND management (knowledge).
Conclusion: This evaluation demonstrates the commitment to implementing a MND MDC in a regional area, to optimise health outcomes and care experiences. However, there is a need to break down complex organisational boundaries to foster collaborative practices and partnerships, critical to developing the MND MDC. Obtaining financial support for the clinic is necessary to ensure sustainability. This research could help inform the design and development of regional based MND MDCs.