title: Multiple sclerosis: disability profile and quality of life in an Australian community cohort.
abstract: The objective of this study was to determine the experience of disability and reported symptoms in multiple sclerosis in an Australian community sample, comparing the perceptions of patients, carers and treating doctors, and to examine effects on quality of life, carer stress and utilization of health services. The study design used a prospective cross sectional community survey. The participants were persons with a confirmed diagnosis of multiple sclerosis, with quantified neurological, mobility and cognitive deficits, from a tertiary hospital database (n=101), who lived at home, and their carers and doctors. The study method used demographic, diagnostic and disease severity data extracted from the database. Structured interviews conducted at home included: (1) open questionnaires for participant, carer and general practitioner, prioritizing symptoms/problems affecting daily living; and (2) standardized assessments for patient quality of life, caregiver strain and perceived burden of care. The mean age was 49 years (range 28-64). Those more severely affected had a significantly reduced quality of life and increased carer burden than those with milder disability, but discordance between patients, carers and doctors was noted in their perception of problems and symptom experience. Rates of depression (67%) and work-related problems were high, but vocational support was rarely provided. Forty persons used interferon, of whom 20 had secondary progressive multiple sclerosis; 39% reported difficulty in accessing rehabilitation services and only 10% were referred to medical rehabilitation units. In conclusion, the rates of disability and symptom experience were similar to other series; however, access and utilization of appropriate rehabilitation and support services appears to be lacking. There were higher reported rates of depression and poor quality of life. Opportunities may possibly exist to re-deploy resources to develop vocational support, counselling and rehabilitation.
authors.affiliation: Department of Rehabilitation Medicine, University of Melbourne, Royal Melbourne Hospital, Melbourne, Australia. fary.khan@mh.org.au
authors.forename: Fary
authors.initials: F
authors.lastname: Khan
authors.forename: Tracey
authors.initials: T
authors.lastname: McPhail
authors.forename: Caroline
authors.initials: C
authors.lastname: Brand
authors.forename: Lynne
authors.initials: L
authors.lastname: Turner-Stokes
authors.forename: Trevor
authors.initials: T
authors.lastname: Kilpatrick
mesh_terms: D000328:Adult; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000145:classification* / Q000503:physiopathology / Q000534:rehabilitation; D011788:Quality of Life; D012720:Severity of Illness Index; D013315:Stress, Psychological; D011795:Surveys and Questionnaires