Medicine (RMH) - Theses
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ItemThe use of International Classification of Functioning, Disability and Health in motor neurone disease rehabilitation( 2011)Motor Neurone Disease (MND) is a relatively rare but fatal progressive neurodegenerative disorder of the motor system in adults. It causes diverse and challenging symptoms and disability. Given the broad spectrum of needs, current “gold-standard” management is ‘‘multidisciplinary care’‘ which includes neurological, rehabilitative and palliative care. This thesis focuses on the rehabilitation phases of multidisciplinary care through investigation of disability from the perspective of persons with MND and their caregivers using cross sectional and predominantly qualitative methodology. Six linked studies address current gaps in evidence-based practice and in services in MND rehabilitation. The studies review existing evidence for multidisciplinary care in MND, and explore the perspectives of MND patients and their caregivers on disability and service gaps. They further describe the disability impact of MND using a standardised framework endorsed by the World Health Organisation – the International Classification Functioning, Health and Disability (ICF) and finally, investigate the effectiveness of a peer support program, which complements rehabilitation in people with MND. Participants with a diagnosis of MND (n=44) were recruited from a tertiary MND clinic. This work was predominantly designed to test the hypothesis that issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the ICF framework. Gaps in evidence and service provision can then be identified to optimise clinical care in both clinical and research settings. Study 1 presented a systematic review of the effectiveness of multidisciplinary rehabilitation and care for MND. Despite some suggestion that multidisciplinary care improves quality of life and reduces hospitalisation and disability; findings were inconclusive as quality of evidence was poor. This study highlighted gaps in current research relating to methodological rigour and appropriate study designs and appropriate outcome measures. Studies 2 and 4 described the patient and caregiver’s perspective of MND-related disability and highlighted gaps in service and also the impact of MND on caregivers, thus allowing recommendations to be made for optimisation of clinical care and further development of service provision and health policies for people with MND and their caregivers. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. Studies 3, 4 and 5 moved a step towards addressing the current lack of a standardised language and consensus for the care for people with MND and their caregivers by mapping their disability experience and relevant environmental factors onto the ICF framework. Study 5 in particular explored relevant personal factors which have been identified as important but not yet been classified within the ICF. Study 6 was a small interventional study (n=7) that explored the value of a peer support program in persons with MND. Whilst the numbers were too small to make conclusive findings, it demonstrated the feasibility of such programs in persons with MND. In conclusion, the gaps in MND care identified should be prioritised for future service development using the “neuropalliative rehabilitation” model of care. For improved consensus of care and communication amongst treating clinicians, the framework of International Classification of Functioning, Disability and Health should be further explored in this population through development of a “core set”.