People with multiple sclerosis help design a tool to measure physical functioning and how it affects their daily lives: a plain language summary

Abstract

What is this summary about?: This summary describes how researchers worked with people with multiple sclerosis (MS), neurologists and measurement experts to create an easy-to-use questionnaire to measure the physical function of people with MS. This questionnaire covers topics that are relevant and important to people with MS and their doctors.The ability to do what you want to do, when you want to do it, is one of the most important concerns for people with MS. This questionnaire could help doctors to record and manage how much MS affects people's lives.MS can bring a range of challenging symptoms such as 'brain fog', tiredness, and problems with movement and balance. Many of these symptoms can make day-to-day activities, like working, very difficult for people with MS. Doctors currently use examinations like the Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC), but these do not fully consider what is important to people living with MS. A questionnaire that specifically measures physical functioning of people with MS could help doctors and people with MS to better understand, communicate and manage the physical effects of MS. In this study, people with MS were asked to help create a questionnaire about physical function that reflects topics that are important to them.

What were the results?: The PROMIS^®nq physical function - Multiple Sclerosis 15a (the PROMIS^® PF MS questionnaire) was successfully created with the help of people with MS. People with MS thought that the PROMIS^® PF MS questionnaire covered issues important to their physical function. Scores were in line with results of other physical symptom measurement scales like the EDSS.

What do the results mean?: The PROMIS^® PF MS questionnaire could be used to meaningfully record physical function among people with MS.

Keywords: lay summary; multiple sclerosis; patient questionnaires; physical functioning; plain language summary.