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MS Patients Should Contribute to Outcome Measure Development

June 26, 2017

According to researchers from the Multiple Sclerosis Center of Atlanta, patients must help develop new outcome measures of multiple sclerosis (MS). They and healthcare providers may have differing perceptions of how crucial various measures are. They published their insights in their study, “Patients Input into Multiple Sclerosis Quality and Outcome Measures,” which was a part of a session called “Comprehensive Care in MS and Symptom Management.” According to the Atlanta researchers, patients are rarely engaged in the process of developing better outcome measures in MS.

The American Academy of Neurology (AAN) published its “Multiple Sclerosis Quality Measurement Set” in March 2015. It’s a document written by healthcare practitioners and representatives from patient organizations. Researchers recruited 486 MS patients to fill out two surveys. The goal was to find out whatever patients really valued the measures presented in this document. In the first survey, MS patients had to rank the document’s outcome measures, including changes in magnetic resonance imaging (MRI), clinical examinations, fall risk, bladder infections, exercise, fatigue, cognitive impairment, depression, and quality of life measures. In the second survey, it included AAN questions plus an additional set of three outcome measures: relapse tracking, medication compliance, and medication access. Out of the 486 patients who agreed to participate in the surveys, only 423 answered them correctly, despite detailed instructions from the staff.

“It is important that patient outcome measures not only reflect what providers feel is important, but also include patient input1. In our survey it was clear that patients and providers both feel that the most important outcomes to measure in MS are patient quality of life and MRI changes,” the team concluded. “Fatigue, examination changes, memory impairment, and medication access also seem important to both groups.”