Patient Input into Multiple Sclerosis Quality and Outcome Measures

Background: Currently, healthcare practice is shifting towards the measurement of patient outcome in disease processes.  Multiple Sclerosis (MS) is no different.  Outcome measure development was a large part of the Affordable Care Act (ACA) and will continue in the future healthcare system.  The most recent piece of legislation, MACRA (Medicare Access and CHIP Reauthorization Act), further focuses on outcome measures.

Neither the ACA nor MACRA clearly define specific outcome measures or how the track them.  The AAN (American Academy of Neurology) put together a task force to develop guidance.  The task force published their recommendations as the American Academy of Neurology Multiple Sclerosis Quality Measurement Set, Neurology, September,2015.  Like most work-groups creating outcomes measures in disease processes, the AAN work-group was largely made up by providers and patients organizations.  We believe that the patient should have a large input in what is important to their disease.

Objectives: To survey patients with multiple sclerosis at the MS Center of Atlanta on the quality measures they felt most important and compare results to those of the providers.

Methods:   Patients at the MS Center of Atlanta were asked to fill out two surveys.  One listed the measures in the AAN measurement set.  The other included the same measures with the three added by providers.  The AAN set included changes in MRI, exam, fall risk, bladder infections, exercise, fatigue, memory, depression, and quality of life measures.  The three additional measures were relapse tracking, medication compliance and medication access. Patients and providers were asked to rank the importance of each measure from most important to least important.  The patient and provider surveys were analyzed and compared to each other.

Results: A total of 486 patients and 11 physicians and nurse practitioners filled out the survey over a 2 month period in the spring of 2016.  Of the 486 patients, 423 were completed correctly and submitted for analysis.  Interesting, despite detailed instructions provided by the staff, 63 patients could not fill out the survey correctly which appeared to be due to cognitive impairment.

The top 2 measures for patients and providers were the same.  Quality of Life and MRI change measures were felt to be the most important by both groups.  For the third most important measure, patients ranked fatigue while the providers noted exam changes.  Both groups ranked  memory and medication access in the top half, while they also ranked depression and relapse measures at the bottom.

Conclusions:   It is important that patient outcome measures reflect not only 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.  Fatigue, exam changes, memory impairment, and medication access also seem important to both groups.