Patient Questionnaires Can Predict Clinical Outcomes in Patients With Multiple Sclerosis

Patient-reported outcomes (PROs) can demonstrate the effects of a disease or treatment. By using patient questionnaires, the results can be analyzed to predict clinical outcomes in medical research for diseases, including multiple sclerosis (MS).

In a study recently published by PLOS Medicine, patients with MS completed the Multiple Sclerosis Impact Scale-29 (MSIS-29) questionnaire, a PRO that evaluates the quality of life of MS patients, every year starting in July 2004.

“Our research shows that by answering a set series of questions, patients can have an important role in predicting long-term prognosis in diseases like MS, and that these types of questionnaire should be used by doctors to get a better idea of the patient’s health,” said Joel Raffel, PhD, from the Department of Medicine at Imperial College London and the research leader.

By 2014, 12.4% of the 2,126 participants had died, revealing an association between higher baseline MSIS-29 physical score and a reduced survival time. The highest MSIS-29 physical scores, representing the poorest physical quality of life, had a 5.7 times higher risk of death than those with the lowest scores. The risk of mortality was also higher for the patients with worsening scores over a 1-year period.

“Traditionally, in medicine, doctors will decide if a patient is getting better or worse,” explained Raffel. “We hope that using patient-reported outcomes like these more and more will mean a shift towards empowering patients. They will be able to provide their own data, so rather than the doctor telling the patient how they are doing, it’s the other way around. What’s more the questionnaire can be completed online and not in the presence of a doctor.”

The questionnaire results allow doctors to see how the MS is progressing and directly affecting the patient’s life. It can also be used to predict how a patient’s health will be improve or worsen in the future.

“Ideally, these questionnaires should be administered routinely, once a year in the clinic or online,” Raffel concluded. “This could help doctors to understand what issues the patients are facing and could also help to answer big research questions around prognosis and which of the available treatments we have for MS are working.”

The study suggests including PROs into electronic automated systems for clinical care and data-collection which will help doctors compare the effectiveness of different treatments and how to personalize the treatment to directly care for the patient’s needs.