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. Needs Task group of MARCH (Multiple Sclerosis and Rehabilitation, Care and Health Services Research in Europe).

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.