Health Questionnaires Can Help to Predict ‘Hard Outcomes’ Like Survival in MS Patients, Study Says

Joana Fernandes, PhD avatar

by Joana Fernandes, PhD |

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Patient questionnaires can beĀ sensitive to signs of disease progression and worsening in neurological disorders like multiple sclerosisĀ just as they are in other diseases,Ā helping doctors to better predict clinical outcomes in patients, a study reports.

Particularly, the study found that MS patients with higher scores on a specific disease questionnaire were nearly six times more likely to die within 10 years than those with lower scores, and that mortality risk also jumpedĀ among peopleĀ whose scores rose on a second taking of same questionnaire.

But the researchers cautioned that their study, titled ā€œPatient-reported outcomes and survival in multiple sclerosis: A 10-year retrospective cohort study using the Multiple Sclerosis Impact Scaleā€“29ā€ and published in the journal PLoS Medicine,Ā was not a tool for predicting mortality but a way to help patientsĀ be more active participants in their care.

ā€œOur 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 patientā€™s health,ā€ Joel Raffel, studyā€™s first author, from theĀ Imperial College London, United Kingdom, said in a universityĀ news release written by Ryan O’Hare.

ā€œWe hope that using patient-reported outcomes like these more and more will mean a shift towards empowering patients,” he added. “They will be able to provide their own data, so rather than the doctor telling the patient how they are doing, itā€™s the other way around.ā€

Among tools often used in the clinic are patient-reported outcomes; that is, questionnaires for patientsĀ that focusĀ on their disease and treatment. But while these questionnaires have many uses, fromĀ screening for symptoms or evaluating treatmentĀ response to improving communications, they are often under-utilized when people haveĀ MSĀ or other neurological diseases, “in part because it is not clear if PROs [patient-reported outcomes] relate to ā€˜hard clinical outcomesā€™ like disability or mortality,” the team noted.

Researchers wanted to determineĀ whether the Multiple Sclerosis Impact Scaleā€“29 (MSIS-29) ā€” a 29-question survey assessing quality of life and disease impact over the previousĀ two weeks ā€”Ā might serve as a way ofĀ predicting a patient’s risk of death.

The questionnaire was completed by 2,126 people, registered withĀ the MS Society Tissue BankĀ in the U.K., beginning in 2004. Of these, 872 patients repeated it one year later.

By 2014, the researchers reportedĀ that 264 of the original group of MS patients (12.4%) had died, and an evaluation revealed thatĀ MSIS-29 scores were associated with 10-year mortalityĀ risk regardless of age, gender, and disability score at the time the questionnaire was completed.

Indeed, patients with highĀ scores on the MSIS-29 questionnaire, indicative of a poor quality of life, were 5.7 times more likely to dieĀ within 10Ā years than those whose scores were lower. The mortality risk rose furtherĀ among people whose MSIS-29 score worsened between the first and second year ofĀ answeringĀ the questionnaire.

ā€œIdeally, these questionnaires should be administered routinely, once a year in the clinic or online,ā€ Raffel said. ā€œThis 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.ā€

The team believes thatĀ questionnaire responses, together with usual clinical assessment toolsĀ like imaging data through MRI scans, could help doctors and patients choose the best course of treatment.