Unmet education, psychological and peer support needs of people with multiple sclerosis

Multiple sclerosis is a complex neurological disease which can cause impairment in a range of aspects of an individual's life. It often requires a degree of adjustment and peer support. The aim of the present study was to examine satisfaction with educational, psychological and peer support services of people with MS across gender, age and symptom severity.

Participants completed a needs analysis questionnaire using Likert scales to determine the level of satisfaction with the support services. The questionnaire was sent to participants (n=3502) throughout Australia as paper copy with reply paid envelope, or made available to them online via email links. A total of 2805 responded and completed the questionnaire (80% response rate). Of those, 79% were female and 21% were male. The participants ranged in age from 19 to 92 years, (M=52.10; SD=11.82).

In terms of psychological services, females were less satisfied with their access to relationship and family counseling. There was also a clear need for more varieties in peer support groups, times, as well as modes of communication, especially among young people and mildly affected groups. Symptom severity was associated with a greater need for almost all education and psychological support services.

The findings of this study highlight current areas of unmet needs and may be used to inform the design and development of future education, psychological and social support services to ensure they are relevant and useful, as well as providing direction for future research.