A primary care-based needs assessment of people with multiple sclerosis

Abstract

Background: Multiple sclerosis (MS) is a common cause of chronic progressive neurological disability where reduction in quality of life is an important feature. Many GPs have MS patients with a range of disabilities. Little is known about the supply of medical and community services and how this compares with demand.

Aim: We aim to describe a community based sample of MS patients and investigate how disease characteristics, benefits, services accessed and perceived needs relate to sense of wellbeing.

Design: Cross-sectional survey.

Setting: Participants were recruited from a representative network of 30 GP practices across Northern Ireland.

Method: MS patients answered a professionally administered questionnaire and agreed to their medical records being examined. Information was collected about their medical condition, sociodemographic characteristics, receipt of benefits and services, perceived needs and sense of wellbeing.

Results: Of the 149 participants, 23% were mildly affected (Kurtzke's Expanded Disability Status Scale [EDSS] 0-4.5), 41% were moderately disabled (EDSS 5.0-6.5) and 36% were severely disabled (EDSS 7.0-9.5). Disability was related to employment, receipt of benefits and services. Physiotherapy was a commonly perceived need. Other perceived needs differed between the moderately and severely disabled groups. Scores relating to wellbeing were related to disability and perceived needs.

Conclusions: The relationship between use of medical and community services and disability is important for planning service provision. We have shown that perceived needs are related to wellbeing. In a progressive illness these developing needs could be anticipated.