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 MNDrelated 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 mo..