Restricted accessResearch articleFirst published online 2000-02
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
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.
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References
1.
Warren M. The prevalence of disability. J R Coll Physicians Lond1989; 23: 171–175.
2.
McLellan DL. Introduction to rehabilitation. In: Wilson B, McLellan D eds. Rehabilitation studies handbook. Cambridge: Cambridge University Press, 1997: 1–19.
3.
Kersten P, McLellan DL. The assessment of need in multiple sclerosis. MS Management1995; 2: 50–54.
4.
Badley EM. An introduction to the concepts and classifications of the international classification of impairments, disabilities, and handicaps. Disabil Rehabil1993; 15: 161–178.
5.
Badley EM. The genesis of handicap: definition, models of disablement, and role of external factors. Disabil Rehabil1995; 17: 53–62.
6.
Peters D. Human experience in disablement: the imperative of the ICIDH. Disabil Rehabil1995; 17: 135–144.
7.
Peters D. Disablement observed, addressed, and experienced: integrating subjective experience into disablement models. Disabil Rehabil1996; 18: 593–603.
8.
Department of Health, Secretaries of State for Health SS, Scotland and Wales. The Health of the Nation. London: DOH, 1992.
9.
World Health Organization. International Classification of Impairments. Disabilities, and Handicaps. A manual of classification relating to the consequences of disease. Geneva: World Health Organization, 1980.
10.
Stevens A, Raftery J. Introduction. In: Stevens A, Raftery J eds. Health care needs assessment. The epidemiology based needs assessment reviews. Oxford: Radcliffe Medical Press, 1994: 11–30.
11.
Stevens A, Gabbay J. Needs assessment needs assessment... Health Trends1991; 23: 20–23.
12.
Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don't agree: Cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. BMJ1997; 314: 1580–1583.
13.
Slevin ME. Who should measure quality of life – the doctor or the patient?Br J Cancer1988; 57: 109–112.
14.
Moroney R. The family and the state: considerations for social policy. London: Longman, 1976.
15.
Greengross S. Caring for the Carers. In: Glendennig F ed. Care in the community: recent research and current projects. Stoke: Beth Johnson Foundation, 1982.
16.
Parker G. With due care and attention: a review of research on informal care. London: Family Policy Studies Centre, 1985.
17.
Hughes D. Caring for people efficiently. Health Policy1993; 25: 81–94.
18.
Roberts M, Martin J, McLellan D, McIntosh-Michaelis S, Spackman A. The prevalence of multiple sclerosis in the Southampton and South West Hampshire Health Authority. J Neurol Neurosurg Psychiatry1991; 54: 55–59.
19.
Maslow A. A theory of human motivation. Psychol Rev1943; 50: 370–396.
