‘Now that I can’t walk, my hands and arms have become my legs….’
a person with MS
We are therefore pushing for future trials of new, and existing, DMTs to focus on arm and hand function and to include pwMS who are already in wheelchairs. As part of the #ThinkHand campaign we are trying to get pwMS and the wider MS community more engaged with hand and arm function and how important it is to people with MS.
We are presenting our #ThinkHand survey results at both ECTRIMS and MS-Life and have a #ThinkHand stand at both these events to engage the community with the hand. As part of #ThinkHand will are launching the 'Cardboard 9-Hole Peg Test (9--HPT)', which we will distribute to as many HCPs and MSers as possible. Having your own 9-HPT will enable you to monitor the impact of MS is having on your arm and hand function. So why the focus on 9-HPT? The 9-HPT is the most widely used and accepted way of monitoring arm and hand function in clinical trials. In short, like the EDSS, the 9-HPT is considered the gold standard tool for measuring the impact of MS on hand and arm function. We believe passionately in empowering pwMS to monitor their own disease and are therefore encouraging you to monitor the impact that MS has on you by providing you with another tool to do this (see www.clinicspeak.com).
Once we have validated the cardboard-9-HPT, against the current version, we will be linking this with the web-EDSS and allow you to log your results online. Our preliminary data indicates that the cardboard 9-HPT is as good, if not better, than the plastic version that is currently used in trials. Other advantages of the cardboard version is that it is environmentally friendly, cheap and much easier to pack and post to people with MS.
At our #ThinkHand stand we will be asking you to volunteer in helping us deconstruct the 9-HPT by looking at the different neurological components used to perform the test. To perform the 9-HPT you need (1) upper limb strength to move the hand, (2) vision to locate the pegs, (3) depth perception to accurately judge picking-up and placing the pegs, (4) sensation to feel and grasp the pegs and (5) coordination to complete the movements smoothly. We will therefore be asking volunteers who come to the stand to perform the test under normal conditions and then under conditions that stress these various neurological systems. For example, we will use an eye-patch to simulate loss of vision in one eye. Another is to use glasses with red and blue colour filters to interfere with depth perception. Wrist weights will used to simulate mild weakness and gloves to alter sensation. For cerebellar dysfunction, TeamG will be taking the cardboard 9-HPT to dinner and doing tests before dinner, and after dinner, to see if alcohol intake affects the performance of the test. We agree that this initiative is gimmicky, but we hope it will imprint on peoples minds how important hand and arm function are to pwMS. We will also be collecting data from volunteers to compare the plastic 'gold standard' version of the 9-HPT with our cardboard 'cheap environmentally-friendly' version.
Acknowledgement & COI: we would like to thank Biogen UK for an unrestricted research grant that is being used to design, test and manufacture the cardboard 9-HPT.