Whether it’s the everyday tasks that keep you independent, like getting dressed in the morning and cleaning your teeth, or being able to do those things you enjoy, like baking or painting, the dexterity and coordination of your hands and arms is essential. This was acknowledged by the MS team at Barts in 2016 when they launched their #ThinkHand campaign and began raising awareness on the importance of upper limb function in the MS community. The awareness campaign has been steadily gaining momentum, so we decided to catch up with Professor Gavin Giovannoni to find out more about the campaign and learn why we should all be ‘thinking hand’
What is the #ThinkHand campaign?
Barts-MS formally launched the #ThinkHand campaign in 2016. It is an awareness campaign with the primary objective to get the wider MS community (such as drug manufacturers and medical professionals) to focus their attention on hand and arm function, particularly in people with more advanced MS. Focusing on upper limb function is really important because it helps keep people with MS independent. When you lose the ability to walk, your hands and arms become your legs, keeping you independent and allowing you to maintain a reasonable quality of life. Unsurprisingly people with MS agree – in a survey of 360 people with MS, 88% of respondents rated hand and arm function as being more important to them than lower limb function.
What are you and your colleagues hoping to achieve with the campaign?
The #ThinkHand campaign has several objectives:
• To get the research community to learn more about the science behind the preservation of upper limb function and to design better clinical trials for people with more advanced MS which will allow wheelchair users to take part.
• To create an environmentally friendly 9-hole peg test for home use. This test allows people with MS to monitor their arm and hand function themselves and see whether their MS is improving, stable or getting worse.
• To survey UK MSologist’s attitudes to the importance of hand function in MS.
• To perform a clinical trial that will study the impact of disease modifying drugs in wheelchair users.
• To challenge NHS England guidelines for stopping disease modifying drugs (DMDs). At present we have to stop these drugs in people who develop secondary progressive MS and/or start using a wheelchair. We owe it to people with MS who are on DMDs to research whether these drugs are still effective in people with more advanced MS.
• To get pharmaceutical companies to do trials in more advanced MS which focus on hand and arm function.
• To get the 9-hole peg test recognised as a primary outcome measure in clinical trials.
• To develop a new, personalised outcome measure for assessing hand function in MS. This will challenge the current model (the EDSS) which focuses on walking distance and speed.
What has the campaign achieved so far?
A lot! The good news is that Roche are about to announce a new clinical trial for people with primary progressive MS which will focus on upper limb function. The primary outcome measure of this trial will be the 9-hole peg test so people who use wheelchairs will be able to take part in the study. This trial may be the catalyst that is needed to get regulatory authorities (like the European Medicines Agency which licenses drugs in the EU) to accept the 9-hole peg test as a primary outcome measure in clinical trials. We’re looking forward to this study starting and shifting the paradigm from #ThinkLeg to #ThinkHand.
We’ve also been raising awareness of the campaign through various events, with #ThinkHand stands at ECTRIMS conferences, MS Life and MS Trust Conferences. Most recently we held a #ThinkHand awareness event for the campaign in London which was a huge success. The event was a celebration of hand and arm function for people with MS. To showcase the importance of this issue we invited a number of people with MS who rely on the use of their upper limbs to keep them independent and able to do the things they feel most passionate about. This resulted in a display of artwork and handmade jewellery, plus live music – all provided by these inspirational people with MS.
Overall the campaign has highlighted, and is continuing to highlight, the massive unmet need for treatments to protect upper limb function in people with more advanced MS.
Can you explain a 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. In clinical trials, outcome measures are typically done at the beginning of treatment (called the baseline) and after treatment has commenced to see whether the treatment is effective or not. More than one outcome measure can be used in clinical trials, but the primary outcome measure is the one that’s considered to be the most important.
A simple example of an outcome measure 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 Expanded Disability Status Scale or the EDSS. The EDSS is the main outcome measure used when testing 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 is why the EDSS is not a suitable outcome measure for trials in people who are using wheelchairs.
Can you tell us more about the 9-hole peg test and how it fits in with campaign?
The 9-hole peg test is an outcome measure that is used to measure finger dexterity and arm function in patients with various neurological conditions. This test has become the gold standard for assessing upper limb function in MS clinical trials, but we would like this test to be recognised as a primary outcome measure in the same way the EDSS is. The commercial apparatus for doing the 9-hole peg test is quite expensive which is why we developed a cheaper cardboard version which people with MS can buy and use at home. This allows people with MS to monitor their hand and arm function themselves. You can find out more about the cardboard version of the test at clinicspeak.com/9-hole-peg-test
Why do you think it’s important to include wheelchair users with MS in clinical trials?
It’s important for us to see whether disease modifying drugs are still effective in more advanced MS. This would challenge the current stopping guidelines for DMDs 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.
Is there anything people with MS can do now to help improve and maintain function in their hands and arms?
Yes, there are plenty of things people with MS can do. There is a saying in medicine: “If you don’t use it, you lose it.” I would encourage all people with MS to adopt a regular exercise and self-administered rehabilitation programme to maintain upper limb function. Another option is to ask your physiotherapist or occupational therapist for an upper limb function exercise programme. Don’t shy away from doing difficult fine motor tasks (activities that use the small muscles in your fingers, hands and wrists like writing and picking up small items); if you stop doing them, you may find it harder to complete these tasks in the future.
In addition, people with MS should do all the common sense things to manage their MS holistically. This includes things like stopping smoking if you’re a smoker and making sure you have optimised your sleep hygiene and diet. If you haven’t done so already, please be screened for high blood pressure and diabetes and 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 these kind of infections as evidence shows that recurrent infections may make MS get worse more quickly. It is also wise for your medications to be reviewed by a health professional regularly as some medications can interfere with the way the brain works and block plasticity pathways. Brain plasticity refers to the brain’s ability to change over time. Plasticity is important for regaining function after a relapse and maintaining function in the long term.
Professor Gavin Giovannoni is Chair of Neurology at Barts and the London School of Medicine and Dentistry.