All About Multiple Sclerosis

More MS news articles for May 2003

How people perceive risk of wheelchair dependence

Friday, May 23, 2003
Boston Cure

An interesting new study published in the European Journal of Neurology describes how people with MS and their partners assess the risk and seriousness of becoming wheelchair dependent in the future. 101 people recently diagnosed with MS and 78 of their partners were asked what they thought the 2-year, 10-year and lifetime risk of wheelchair dependence was for the person with MS. They were also asked how serious they thought wheelchair dependence at each point in time would be.

Many interesting findings emerged. First of all, both people with MS and their partners tended to overestimate the chances of wheelchair dependency at 2 and 10 years compared with epidemiological data (2 year perception of risk was 22.5% vs. estimated risk of 5-10%; 10 year perception was 38.7% vs. estimated risk of 20-25%). However, they tended to underestimate lifetime risk (54% vs. 70-80%). Also, about a third of the people with MS judged their 10-year or lifetime risk to be 50% -- when asked why, these respondents were more likely to express uncertainty and may have defaulted to 50% as a "safe" guess.

Participants judged the seriousness of wheelchair dependency to be around 70-80 on a scale of 0-100 (100=most serious thing imaginable); dependency at 2 years was thought to be more serious than at 10 years or later. Also, people with greater disability as measured by EDSS score tended to consider the eventual need for a wheelchair as less serious than those with fewer limitations.

When analyzed collectively, the responses from people with MS were similar to those from partners. However, within individual couples there were often discrepancies. About half of all couples were 20 points apart or more on a scale of 100 in their perceptions of risk and/or seriousness.

The uncertainty associated with MS prognosis is reportedly one of the most difficult aspects of the disease to cope with. To me, that means there is a huge potential benefit to be gained from studying it. Perhaps by better understanding the nature of this uncertainty itself, the scientific community can find ways to help people with MS and those close to them better cope with and communicate about this condition.

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