GERMANY & UK: Questionnaires can be a good predictor of survival rates in multiple sclerosis

The way in which patients with multiple sclerosis answer questionnaires could help to predict their survival rate from the disease, according to a new study which shows that MS patients with higher scores on a standardised questionnaire were more likely to die in the next 10 years compared to those who recorded lower scores

The researchers at Imperial College London and the University Medical Centre Gottingen, believe the study is the first to show that such patient-reported outcomes, captured by simple questionnaires, can be used to predict clinical outcomes in neurological diseases, like MS.

“Traditionally, in medicine, doctors will decide if a patient is getting better or worse,” said lead researcher Joel 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.”

While these tools cannot yet be used to accurately predict individual survival, at a group level they could help to compare the effectiveness of treatment options, and tailor healthcare to an individual’s needs.

“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,” said Raffel “These types of questionnaire should be used by doctors to get a better idea of the patient’s health.”  

As MS is a complex and highly variable disease, it can vary from one person to the next, making it difficult to give patients an accurate prognosis on how their disease will progress.

In the study, patients completed a standardised questionnaire which graded to what degree their symptoms impacted on their lives. The multiple sclerosis impact scale (MSIS-29) asks patients a series of 29 questions to find out how their MS has affected them in the previous two weeks. It uses a scale from one to five, with five being most affected.

A total of 2,126 patients registered with the UK Multiple Sclerosis Society Tissue Bank completed the questionnaire in 2004, with 872 of this group completing a second survey one year later. Within 10 years, 264 of the original patient group had died.

Researchers found that those patients who scored highest on questions relating to physical health were 5.7 times more likely to die from the disease within 10 years, compared with the lowest scoring patients. Mortality risk was 2.2 times higher still in those whose score increased on their second questionnaire, compared to those with a stable or decreasing score.

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

Patient-reported outcomes and survival in multiple sclerosis: a 10-year retrospective cohort study using the Multiple Sclerosis Impact Scale-29, is published in the journal PLOS Medicine.

https://doi.org/10.1371/journal. pmed.1002346

 

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