Top 10 Needs of People With Multiple Sclerosis and Their Significant Others

Wilma J. Koopman; Cathy-Lee Benbow; Margaret Vandervoort


J Neurosci Nurs. 2006;38(5):369-373. 

In This Article

Abstract and Introduction

The purpose of this study was to identify the needs of patients with multiple sclerosis (MS) and their significant others. A quantitative questionnaire, developed from focus groups and consisting of 75 needs statements, was administered to 353 MS patients and 240 significant others. Analysis produced rankings of the 10 most important needs of both groups. Rankings by the MS patients and significant others were similar. Three themes emerged. Psychosocial and other personal needs (relationship with physicians, the MS healthcare team, family, and friends) were ranked with high frequency. Information needs (information regarding MS or available support) and financial security were also ranked as important. The data validate the importance of interdisciplinary care for the MS population.

Multiple sclerosis (MS) is a chronic neurological disease with no known cure. Various symptom-management strategies are available to people living with MS; treatment with interferons or copolymer acetate shows modest results. MS does not significantly affect mortality, but the disease can have a significant impact on quality of life (Ford, Gerry, Johnson, and Tennant, 2001). As people with MS and their significant others negotiate life with a chronic, unpredictable illness, they often turn to hospital- and community-based services for assistance.

The MS Clinic in London, ON, Canada, is an interdisciplinary outpatient clinic based in an acute-care, university-affiliated, hospital setting. A needs-assessment survey was conducted by the MS Clinic to develop an effective and efficient plan of care for MS patients and their significant others through better understanding their needs.

The purpose of this study was to identify the needs of individuals with MS and their significant others by using a patient-derived needs-assessment questionnaire. The study was set in the framework of patient-centered care (Gerteis, Edgman-Levitan, Daley, and Delbanco, 1993). The information obtained was used to examine and enhance clinic-based care. This article focuses on the 10 most important needs identified by individuals living with MS who attended the MS Clinic and by their significant others. The psychosocial needs of this study population are published in a separate journal article (Benbow & Koopman, 2003).


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