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A questionnaire assessment of unmet needs for rehabilitation services and resources for people with multiple sclerosis: results of a pilot survey in five European countries

Health Research Unit, School of Health Professions and Rehabilitation Sciences, Southampton, UK

D L McLellan

Rehabilitation Research Unit, University of Southampton, Southampton, UK

K Gross-Paju

Department of Neurology, Tartu, Estonia

N Grigoriadis

AHEPA Hospital, Thessaloniki, Greece

R Bencivenga

Italian Multiple Sclerosis Society, Genova, Italy

C Beneton

Centre Medical Germaine Revel, Mornant, France

M Charlier

P Ketelaer

National Centre for Multiple Sclerosis, Melsbroek, Belgium

A J Thompson

The National Hospital for Neurology and Neurosurgery, London, UK

Objective: To develop an international services and needs assessment instrument (SUN) for people with multiple sclerosis and their carers and to pilot this in different countries of the European Community.

Design: Interview study of people with multiple sclerosis, their carers and nominated key professionals examining the unmet needs of patients and carers.

Setting: Belgium, Estonia, Greece, Italy and the United Kingdom.

Main outcome measures: Needs assessment questionnaire.

Results: The study comprised 137 people with multiple sclerosis, 125 carers and 111 professionals. Patients reported on average 2.9 unmet needs for themselves; their carers and professionals reported on average 2.4. Needs were categorized into seven broad categories. Due to difficulties experienced by the local researchers in distinguishing between needs and objectives a large proportion of needs had to be assigned to the ‘other’ category.

Conclusions: The SUN is a valuable and practicable tool for the identification of unmet needs for people with multiple sclerosis and their carers. Formal validation and reliability testing of the different language versions is recommended.

Clinical Rehabilitation, Vol. 14, No. 1, 42-49 (2000)
DOI: 10.1191/026921500669834306


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