#CMSC17 – MS Patients Should Contribute to Outcome Measure Development, Study Argues

Patients must help develop new outcome measures of multiple sclerosis (MS), since they and healthcare providers may have differing perceptions of how crucial various measures are, a new study argues.

Researchers from the Multiple Sclerosis Center of Atlanta shared this insight today at the Consortium of Multiple Sclerosis Centers (CMSC) 2017 Annual Meeting, taking place May 24-27 in New Orleans. Their study, “Patient Input into Multiple Sclerosis Quality and Outcome Measures,” was part of a session called “Comprehensive Care in MS and Symptom Management.”

The Atlanta researchers noted that although developing better outcome measures in MS is a common goal, patients are rarely engaged in that process.

In March 2015, the American Academy of Neurology (AAN) published its “Multiple Sclerosis Quality Measurement Set,” a document written by healthcare practitioners and representatives from patient organizations; patients themselves were not involved in formulating outcome measures.

To find out whether patients really value the measures presented in this document, researchers recruited 486 MS patients to fill out two surveys. In the first, MS patients were asked 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. The second survey 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 staff. Researchers suspected that cognitive impairment prevented the remaining 63 from correctly filing them out. Besides patients, 11 physicians and nurse practitioners also filled in surveys.

Both healthcare staff and patients ranked quality of life and MRI changes as the most important measures. But then the opinions diverged, with patients putting fatigue in third place, and healthcare providers listing exam changes. Both groups agreed that cognitive evaluations and medication access were important, and ranked them as relatively mportant measures. Likewise, both groups ranked depression and relapse measures low, putting them towards the bottom.

“It is important that patient outcome measures not only reflect what providers feel is important, but also include patient input. 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.”