Sunday, 11 September 2016

MeasurementSpeak & #ThinkHand: cardboard 9-hole peg test

‘Now that I can’t walk, my hands and arms have become my legs….’
                                                                               a person with MS


It is obvious that preserving arm and hand function are critical for people with MS (pwMS) to remain independent and to preserve their quality of life. Our recent survey showed that ~95% of pwMS rate their arm and hand function as being more important to them than their lower limb function. Several DMTs have been shown to slow down the loss of arm and hand function, whilst having little impact on lower limb function in pwMS with more advanced MS, i.e. with walking difficulties and particularly in pwMS who need a walking aid (EDSS >= 6.0). The biology of why DMTs have a greater impact on upper limb function is more advanced MS are underpinned by our length-dependent axonopathy and therapeutic lag hypotheses. 

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. 

Cardboard 9-HPT

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.

Plastic 9-HPT

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.

8 comments:

  1. Prof G for those of us who live outside the UK will we be able to buy a cardboard 9-HPT?

    ReplyDelete
    Replies
    1. Re: "....will we be able to buy a cardboard 9-HPT?"

      We haven't entertained the idea of selling them. We don't want to make a profit out of them. They cost less than $2 each to manufacture. We may seek-out a vendor to sell them for us at cost plus postage and the vendors fee for doing all the leg work for us. Hopefully we can get them posted to you for less than $5.

      Delete
  2. Great idea. In the mean time I could use peg and hole board games to see how I am, like peg solitare and cribbage.

    ReplyDelete
  3. I'm very interested in purchasing the 9-HPT. But I live in Brazil.

    It would be important to have a supplier to send the 9-HPT for those interested in buy it in other countries.

    ReplyDelete
    Replies
    1. I have looked online and the cost of a plastic one, used by neuros, is over £100. This is unbelievable for a piece of plastic I'm sure they could be 3D printed for a fraction of the cost.

      Delete
  4. Drill 9 holes in a block of wood and buy 9 wooden dowels at a hardware store. :-)

    ReplyDelete
    Replies
    1. Re: "Drill 9 holes in a block of wood and buy 9 wooden dowels at a hardware store. :-)"

      Yes, that is exactly how it was made in the past. I will paste some DIY solutions online over the next few weeks including the one you just mentioned.

      Delete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.