Whilst the vast majority of MND research happens in the lab, there is also an increasing amount of research activity looking into how best to manage the various symptoms of the disease. There are a lot of unanswered questions as to ‘What Works and What Doesn’t?’ and without a decent level of evidence, it is increasingly difficult in these cash-strapped days to get new or even existing types of therapy adopted into mainstream statutory care.
One such ‘Cinderella’ subject is psychological support for people with MND. It’s hardly surprising that studies show almost half of people diagnosed with MND experience depression and almost a third experience anxiety, yet there is very little guidance on how to best address these symptoms. As a result, formal psychological support is not routinely offered and where it is, the particular approach taken is based on best judgement rather than robust evidence.
So, it was encouraging news when last year the research funding arm of the NHS, the National Institute for Health Research (NIHR), announced a call specifically for projects to look into the ‘Clinical impact and cost-effectiveness of interventions to improve the psychological health of people with MND’. The result of that funding call is a major new therapy research trial, led by Dr Rebecca Gould of University College London and Professor Christopher McDermott of University of Sheffield, that will start in December 2017.
“Psychological distress is such a poorly-recognised and investigated aspect of MND, not only for the patient but also of course for their carers and families” says Dr Gould.
“Needless to say, it can have a profound effect on quality of life, but some studies also indicate that it may also be linked with reduced survival.
“We were delighted that the MND Association was keen to support the proposal, not only by lending their expertise, but also by offering to contribute up to £80,000 to help support the therapy costs, which are not covered by the £1.3 million NIHR award.”
The COMMEND study (Acceptance and Commitment therapy for people with motor neuron disease) will focus on a particular technique known as Acceptance and Commitment Therapy (ACT), which has been shown to be beneficial in chronic pain and other chronic physical and mental conditions.
Dr Gould and her colleagues have divided the study into two parts; the first part, taking up to 19 months, will focus on developing an ACT intervention that is specifically tailored to the needs of people with MND. This will occur through a series of workshops and interviews with people with MND, carers and healthcare professionals. Once the intervention has been developed, a small number of volunteers will be recruited to check the ease of use and appropriateness of the therapy. Once they are confident they have the ‘right tools for the job’, the researchers will conduct a randomised trial (run in a similar fashion to a drug trial) in almost 200 people with MND to find out whether ACT can improve psychological health and quality of life. The trial will consist of up to eight face-to-face sessions held at the participant’s home or in GP surgeries (videoconferencing sessions will also be offered where necessary). Carers will also be asked to complete some short questionnaires to check whether there are any knock-on effects on their quality of life. The study is set to initiate later this year, with recruitment for the workshops due to start in December 2017. Recruitment for the first part of the study aimed at checking the ease of use and appropriateness of the therapy is expected to run from June 2018, and the randomised trial from July 2019.
“We were thrilled by the enthusiastic response when we first raised this study with colleagues in MND centres across the country. We hope that at least 14 of the Association’s Care Centres will be able to take part in the main trial in due course.
“Ultimately, we hope to demonstrate that ACT has a positive and cost-effective impact for people with MND, which would provide the evidence base that will support the roll-out of the intervention across the NHS – and perhaps in other countries as well.”