Nice when people recognise your work. Well done ProfG, DrK, Alison, our PPI team, MS Pharma and the MS community for getting behind the campaign to view hand function as something that we strive to save when we have sadly failed with leg function.
#ThinkHand is a multifaceted campaign to get the wider MS community to focus on the importance of hand function for people with MS with the aim of keeping them independent.
Q: Why is upper limb function so important for people with MS?
Simple to keep pwMS independent. When you lose the ability to walk your hands and arms become your legs. In a survey of 360 people with MS (pwMS), which we have now published, 88% of respondents rated hand & arm function as being more important to them than lower limb function (Dubuisson et al. 2017). Are you surprised?
Q: Why have you decided to raise awareness about the importance of hand and arm function now?
Because recent clinical trials have shown that disease-modifying treatments, in people with more advanced MS, can still delay worsening disability on hand function despite having very little, or no, impact on leg function. In fact, this observation has been in the literature since the early 90’s and we as a community have ignored it. This has led us to develop a new model for explaining progressive MS based on the length of the nerve fibres; we call this the ‘length-dependent axonopathy hypothesis’ of progressive MS. In short the longer the nerve fibre the more likely it is to be affected by multiple MS lesions the more likely it is to die off. This is why progressive MS presents in the legs before the arms; the length of the nerve fibres supplying the legs are much longer than those supplying the arms.
Q: Can you give an overview of the #ThinkHand campaign?
#ThinkHand is a public awareness campaign with the objective to get the wider MS community to recognise hand function in people with more advanced MS (pwMS). It has achieved the following:
- To get the research community to study the science behind the preservation of hand function in MS.
- The design and validate of an environmentally friendly cardboard 9-HPT for assessing hand function on pwMS at home.
- A survey of UK MS experts attitudes to the importance of hand function in MS, which was presented using a very cool hand-made poster, made out of cardboard, and helium-filled balloons. It is now published.
- Barts-MS walk the talk; we designed and wear #ThinkHand T-shirts.
- Held an online ‘Burning Debate’ on the motion that people in wheelchairs should be included in clinical trials.
- We have hosted #ThinkHand booths at several conferences and given many platform presentations on #ThinkHand.
- #ThinkHand is challenging NHS England guidelines for stopping therapies in pwMS using a wheelchair.
- #ThinkHand has convinced Pharma to start a large trial in more advanced MS focusing on hand function as the primary outcome.
- Developed Under&Over a rehabilitation tool to improve hand function in pwMS.
- We held a #ThinkHand awareness event in London on the 22nd February to celebrate hand function in pwMS. It was covered in the Evening Standard.
- A successful grant application to the NIHR to do a trial in wheelchair users with MS.
Who were the participants in this activity and how were they engaged with or affected by the project?
The participants include several stakeholder groups:
- People with MS who helped design the cardboard 9-hole peg test and the Under&Over a rehabilitation tool.
- At the #ThinkHand event we invited people with MS to celebrate their hand function, this included artists, musicians (jazz pianist) and a world-renowned jewellery maker to highlight the importance of hand function.
- Our two #ThinkHand surveys targeted people with MS and healthcare professionals.
- We also invited many different stakeholder groups to our event including people with MS, their family and friends, MS charities, Pharma, high-worth individuals (potential donors), journalists (Evening Standard, BBC and several healthcare publications), NHS staff from other MS centres and staff from Queen Mary.
- All of our activities were promoted and discussed on the Barts-MS blog that has a very wide reach with over 120,000 views per month
- Several of our #ThinkHand events were held and conferences and these were attended by pwMS (MS Life), MS nurse specialists (MS Trust annual conference) and ECTRIMS (neurologists and MS researchers).
How were you or your research/learning influenced as a result of this activity? *
As a result of our #ThinkHand campaign we have:
- Had an academic publication (Dubuisson et al. Validation of an
environmentally-friendly and affordable cardboard 9-hole peg test. Mult Scler
Relat Disord. 2017 Oct;17:172-176).
- We have been given two large donations (£50,000 & £20,000) from private donors towards our work on hand function in MS
- Started a large international Pharma sponsored trial (ORATORIO-HAND, Roche), on which Professor Giovannoni is the principal investigator.
- Been awarded a large grant from the NIHR to do a QMUL-sponsored trial in people with more advanced MS in wheelchairs (CHARIOT-MS; Klaus Schmierer).
- A grant to design and validated our environmentally friendly cardboard 9-hole peg test (Alison Thomson).
- A grant to design a hand rehabilitation tool (Under&Over) (Alison Thomson).
- A grant to research the impact the Under&Over tool has on patient outcomes (Alison Thomson).
What is innovative about this activity, or why has it proved more effective than similar activities? *
The #ThinkHand campaign is innovative for several reasons:
- Co-design with people with MS of an environmentally friendly 9-hole peg test made out of cardboard. We have distributed ~9,000 of these worldwide and are using it in clinical practice. As a standalone innovation, this won an award from Barts Health NHS Trust in 2017
- Use of a hand-made poster, out or recycled cardboard, to highlight the importance of hand function. This poster was the most identified poster at the major ECTRIMS conference in 2016.
- Co-design with people with MS of a hand rehabilitation tool (Under&Over) that is now being formally assessed in a study
- Use of social media to launch and maintain the campaign including online debates
- Use of the humble tee-shirt to promote the campaign
- Use of several props and stands at conferences to highlight the campaign and its objectives
- The holding of a well advertised public event to celebrate hand function in people with MS. This event was covered by the Evening Standard and several other specialist publications including the MS charities. As a result of this event, the MS Society agreed to support and co-fund our successful NIHR grant application for the CHARIOT-MS study.
Did you work with any external partners? If so, how were they involved in the project, in what way did they contribute to the activity and what did they get out of it?
The #ThinkHand campaign involved many external and internal partners:
- Agency of Design an SME who helped us design the cardboard 9-HPT, the hand rehabilitation tool (Under&Over) and our #ThinkHand booths at several conferences.
- Medical students who helped validated the 9-HPT and man the #ThinkHand booths at the many conferences we presented the campaign at.
- People with MS as co-designers and exhibitors at our #ThinkHand event. One of the exhibitors has received a commission for some art from an attendee at the event
- Our blog readers
- The MS Society, MS Trust and Shift.ms; all MS related charities who have helped publicise and promote #ThinkHand. Importantly, the MS Society has agreed to contribute £500K towards our NIHR grant for the CHARIOT-MS study
- Pharma companies. Roche as a result of the #ThinkHand campaign is now sponsoring a large international clinical trial of one of their drugs to see if it can delay the progression of hand-related disability in people with MS.
- Stratified Medicine an SME who helped organise and run our #ThinkHand event in London
- QMUL staff for helping us with our campaign and attending the #ThinkHand London event.
Q: What are you and your colleagues hoping for it to achieve? What are your main objectives?
We want (1) trials in more advanced MS to include people in wheelchairs, (2) the regulators to accept the 9HPT as a primary outcome for phase 3 trials, (3) to have treatments for people with more advanced MS (wheelchair users) to protect arm and hand function and (4) evidence-based stopping criteria for DMTs. We also want the Chariot-MS study to be get started as soon as possible.
Q: What has the campaign achieved so far?
A lot. The good news is that Roche has announced a new phase 3b trial of ocrelizumab in PPMS that will include pwMS using wheelchairs. The primary outcome of this trial will be the 9-hole peg test. This trial has been the catalyst to get regulatory authorities, in particular, the EMA and FDA, to accept the 9HPT as a primary outcome measure in clinical trials.
From Barts-MS perspective the campaign has highlighted the massive unmet need for treatments to protect upper limb function in people with more advanced MS and how our proposed Chariot-MS study addresses this need. We remain hopeful that the NIHR, the MS Society, the NMSS and the wider community will fund this study.
Q: Has the campaign been well received by people with MS and others in the MS community?
Yes and no. Yes, because it highlights the obvious and addresses an unmet. No, because a lot of people with MS don’t want to be reminded about what could happen to them down the line. From a scientific perspective the reception of the campaign has been lukewarm and on occasion opposed. I am not sure why, but I have an inkling that it is because of some of the principles underpinning the science of #ThinkHand are challenging long-established dogmas. To quote Arthur Schopenhauer; “All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” #ThinkHand is a long way off from becoming self-evident.
Q: Can you explain a little bit more about outcome measures and how they’re used in clinical trials?
An outcome measure is simply the result of a test that is used to objectively determine, and monitor, the function of a patient. Outcome measures are typically done at the beginning of treatment (baseline) and after treatment has commenced determining if the treatment is effective or not. A simple example is body weight. Body weight is used to determine the effectiveness of diets. In MS there are many outcome measures, but the dominant one is the so-called Expanded Disability Status Scale or EDSS. The EDSS is used to test drugs to see if they can delay worsening of MS. The problem with the EDSS is that it is dominated by walking ability and does not capture arm and hand function very well. This why the EDSS is not suitable for trials in people who are using wheelchairs.
Q: Why do you think it’s important to include wheelchair users with MS in clinical trials?
To see if DMTs are still effective in more advanced DMTs. The latter would challenge the current DMT stopping guidelines that are not evidence-based. Why should we write-off people with MS as being irredeemable once they have lost lower limb function? We know how important arm and hand function is to people with MS. If we can maintain people’s upper limb function we will maintain their quality of life, keep them independent and save the NHS and society money.
Q: Can you tell me more about the 9-hole peg test and how it fits in with the campaign?
The Nine-Hole Peg Test (9HPT) is used to measure finger dexterity in patients with various neurological diagnoses. The 9HPT has become the de facto the gold-standard for assessing upper limb function in MS clinical trials. The commercial apparatus for doing the 9HPT is quite expensive, which is why we developed a cheap cardboard version. We have produced a short online video that demonstrates how easy it is to use the cardboard version of the test.
Q: Do you think the campaign will help to deliver treatments for people with progressive MS?
Yes, we have had several trials already that have shown positive outcomes in hand & arm function, i.e. they have slowed down worsening in upper limb disability. If the regulatory agencies, the FDA and EMA, recognise this and accept the 9HPT as a primary outcome measure in trials then I can see licenses for DMTs being extended to include people with more advanced MS, i.e. those using wheelchairs.
Q: For people with MS who are worried about losing upper limb function, is there anything they can do to help maintain function in their arms and hands?
Yes, there are plenty of things pwMS can do. There is a saying in medicine ‘if you don’t use it you lose it’. I would encourage all pwMS to adopt a regular exercise and self-administered rehabilitation programme to maintain upper limb function. We are in the process of developing a new personalised outcome measure an online training tool for this. Another option is to ask your physiotherapist or occupational therapist for an upper limb exercise programme. Don’t shy away from doing difficult fine motor tasks; if your battle to complete them and stop doing them simply means you won’t be able to do them ever again. In addition, pwMS should do all the common sense things to manage their MS holistically, i.e. stop smoking if you are a smoker and make sure you have optimised your sleep hygiene and diet. If you haven’t done so already please be screened for hypertension and diabetes and if you have these diseases make sure they are properly treated. If you are having recurrent infections, for example, urinary tract infections, you need to make sure you are following a programme to prevent infections. There is evidence that shows recurrent infections may make MS get worse more quickly. It is also wise to review all your medications, some of them may be interfering the way the brain works and actually be blocking plasticity pathways. Plasticity is important for regaining function after a relapse and maintaining function long term.
Horne Family Foundation – #ThinkHand campaign and new upper limb patient-related outcome measure
Biogen – Cardboard 9HPT , ECTRIMS 2016 stand
Roche – Under&Over, ORATORIO-HAND & ECTRIMS 2018 stand
NIHR, MS Society, NMSS, Merck – CHARIOT-MS
Morris-Saady Charitable Trust – Support for development of CHARIOT-MS concept
Lipomed GmbH – Support for development of CHARIOT-MS concept
QMUL – support for #ThinkHand
Oh yeah? How’s that going to help me write again? A helpful suggestion would be worth far more.
Thankyou MouseDoctor for taking the time to write this detailed post and thankyou to everyone who has been actively involved in your ThinkHand campaign. Although playing the piano personally is becoming more of a challenge because of exhaustion, pain and concentration issues, I find it so therapeutic and enjoyable. I long to be able to preserve my hand function so aim to practise scales most days to keep those fingers moving. Would encourage everyone to have a go at learning an instrument, whatever your age – so many benefits and much more fun/rewarding than sitting passively watching the TV!
And very well written as well. I am impressed at the breadth and depth of your activities and ambition. People with MS are very appreciative of your efforts. I really hope the trials are positive. Congratulations and well-deserved. Clap! Clap!
Great article as well as informative and very good so see column inches on advanced MS.
When will Under&Over be available for the great unwashed (the likes of me) for use and practice. ProfG was seen using one via a picture on this blog when flying back from Ectrims 2018. It looks therapeutic as well as being good for hand-eye co-ordination and use of the hand and also a bit of fun.
These days I can hardly write, using a keyboard is a bit ‘hit and miss’ and my left hand is definitely getting weaker. I’m left handed but I must now use a cork-screw as if right handed. I’ve cut down on my intake, I wonder why?
When do you plan to roll out the new personalised outcome measure an online training tool for this to maintain hand functionality. Do you need any guinea pigs?
I’m a musician. Piano playing has not changed much but I have lost the ability to write. My walking is fine but my bladder control is very bad.life is pretty miserable right now. I’m On natalizumab. Fampyra, betmiga and Sativex. I don’t know if things will ever improve to the point of 1/2normalcy. Now I know I have MS. No more hope.
I was having a lot of problems doing crochet due to tremor in my left hand. I was ready to get rid of all my crochet equipment and books. Then, in a last ditch attempt I searched on YouTube for any method of doing some similar craft using just one hand. I found a video of a remarkable lady who had just one arm doing crochet in a novel way. This inspired me greatly. I then found a new way for me, working on top of a cushion. I was so happy… Just never give in is the moral of my tale.
Please forgive my ignorance if you have already posted on this but can I ask if there is any evidence (from previous trials on progressive patients?) that Alemtuzumab would NOT help preserve hand function in the same way as Ocrelizumab and Cladribine?
Yes the post of Coles et al 2006 indicating that progressive MS does not respond to peripheral DMT has had some repercussions. I have no doubt that alemtuzumab would work as well as ocrelizumb if the trialdesign was comparable. However I am not sure we will ever know as I do not think the progressive MS studies are going to get done..patent life is ticking and incredible mistakes have been made in my opinion. If the secondary autoimmunity aspect had been sorted out, when there was no competitiors we would be in a different playing field. ProfG went to the manufacturer many years ago with suggestions…