A plain language summary of a study exploring the experiences of people with relapsing-remitting multiple sclerosis: what symptoms and impacts of the disease matter most and how can they be evaluated better?
Research output: Contribution to journal › Research article › Contributed › peer-review
Contributors
Abstract
Plain Language Summary: What is this summary about? Multiple sclerosis (MS) is a disease that affects the brain and spinal cord, collectively known as the central nervous system. This results in a wide range of symptoms that may become worse over time and lead to permanent disability. In order for people with MS, and their doctors, to observe, better understand, and measure meaningful changes in the symptoms and effects of the disease from the affected person’s perspective, tools such as disease-specific questionnaires are required. Questionnaires completed by people with MS can be used to measure how they feel and the impact that MS has on their daily life (i.e., their experiences). Such questionnaires are called patient-reported outcome (PRO) measures. It is essential that reliable PRO measures are developed in collaboration with people living with the disease, so that the impact of MS can be assessed. In this study, we conducted interviews with people who have relapsing–remitting MS to understand the symptoms and impacts of the disease that they commonly experience and those that bothered them the most. What did the study show? The most-commonly reported symptoms and impacts of MS fell into three categories: (i) fatigue; (ii) problems with physical function (e.g., difficulty walking); and (iii) problems with the senses (e.g., vision). An overview of MS was developed that shows the symptoms and impacts of the disease identified in the interviews, as well as the key disease processes that drive the progression (worsening) of MS. What do the results of the study mean? This study shows the significant burden of fatigue and impaired physical function on people with MS, highlighting the importance of evaluating changes in fatigue and physical function from the affected person’s perspective using PRO measures. This is an abstract of the Plain Language Summary of Publication article. View the full Plain Language Summary PDF of this article to read the full-text.
Details
Original language | English |
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Pages (from-to) | 1-8 |
Number of pages | 8 |
Journal | Neurodegenerative disease management |
Publication status | E-pub ahead of print - 23 Jan 2025 |
Peer-reviewed | Yes |
External IDs
ORCID | /0000-0001-8799-8202/work/176862866 |
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Scopus | 85216091560 |