Patient/carer perceptions of disability in motor neurone disease and carer coping

Abstract

Aims: To compare patient- and carer-reported disability in motor neurone disease (MND) using the International Classification of Functioning, Disability and Health (ICF); and to describe carer burden, psychological coping, and quality of life. Methods: A prospective cross-sectional survey of MND patients (n=44) and carers (n=37). Their MND-related problems were linked with ICF categories (second level) using open-ended questionnaires and ‘linkage rules’. Standardized assessments measured carer psychological coping (depression/anxiety/ stress), strain/burden, quality of life (QoL), and coping strategies. Findings: MND patients were older than their carers (mean age 61, carers 57) there were more male patients than carers (66%, carers 27%). Most carers were spouses/partners (89%). MND patients identified 70 ICF categories whereas carers identified 8: body function 15 (carers 0); body structure 5 (carers 0); activities and participation 40 (carers 6); environmental factors 10 (carers 2). Main ICF categories in activities and participation linked by patients and carers were general tasks and demands, mobility, self-care, community, social and civic life. Environmental factors included support and relationships, services, systems and policies. Carer psychological coping and burden were significant, but self-reported QoL for carers was good, possibly related to use of problem-focused coping strategies. Conclusions: ICF adequately incorporates perspectives of MND patients and carers, which may enable development of a ‘core set’ (ICF categories selected by experts that list issues in impairment, disability, participation, and environmental factors that need to be addressed in multidisciplinary care settings) to optimize care. Reduction in carer burden will optimize outcomes for MND carers and patients.