What People with Newly Diagnosed MS (and their Families and Friends) Need to Know

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Abstract
The aim of this retrospective study was to determine from people with multiple sclerosis (MS) and their families what information would assist a person with newly diagnosed MS — in which format, when, and from whom it should be delivered. Thirty-four Queensland, Australia, residents with MS and 18 family members and friends participated in the main study. Participants were self-selected for this purposive, statewide, cross-sectional study. Nine of the respondents answered open-ended questions in addition to the standard questionnaires, and seven respondents gave in-depth interviews. The respondents recommended that people with a recent MS diagnosis and their families be given a wide range of information reflective of their personal needs. The information should be provided in person (in both group and individual sessions). They preferred to receive the information from their physicians and the staff of the Multiple Sclerosis Society. Research aimed at cures and therapies, as well as counseling and support services, should be discussed early in the course of the disease. Because of the small sample size and retrospective design, additional studies with larger populations are suggested to confirm these results and their cross-cultural applicability.

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