As you may know, we at Barts-MS are passionate about the importance of upper limb function for people with MS. And our #ThinkHand campaign aims to increase awareness.
Part of this project is to develop a new way for people to record and measure their upper limb function. We currently work with Patient Reported Outcome Measures (PROMs), such as the ABILHAND, which is a questionnaire that patients are asked to complete at clinical visits. Read more about that in a previous blog post.
We are now running the Measurement on Our Terms study. This consists of three focus groups with people with MS, which will contribute to the development of a new resource to measure upper limb function. We want to create something that's more useful and meaningful; to record how hand and arm function is affected by MS, and what this means in real life, for real people.
For this, we need your help!
We are looking for as many people as possible to tell us what everyday arm and hand activities are affected by their MS. This could be in any sort of activity, from getting up and dressed, cooking and eating, to more specialist hobbies, or activities conducted as part of your profession. It is all relevant and we need to know about this in as much detail as possible.
If you have 5 minutes please complete the survey below and help contribute to our project. We also need to know your EDSS score (which you can find out via the webEDSS) and the result of the 9 hole peg test (leave your details in the survey and we will post you one for free). You can complete the survey without completing the 9 hole peg test, but we do need this information too, so please leave your details if you possibly can.