Psychological therapy can significantly improve quality of life for people living with motor neuron disease (MND) when delivered alongside usual care, finds a study led by UCL and University of Sheffield researchers.
The largest-ever trial of a psychological intervention for patients with the debilitating neurological condition, published in The Lancet, found that Acceptance and Commitment Therapy (ACT) improves overall quality of life, when integrated alongside existing care.
MND is a progressive, neurodegenerative disease with no cure. It affects motor neurons, which are found in the brain and spinal cord, that help tell your muscles what to do. MND causes these messages to stop reaching the muscles, causing them to weaken, stiffen and gradually die. The disease affects a person's ability to walk, talk, eat and breathe. MND kills a third of people within a year and more than half within two years of diagnosis.
Scientists around the world are working to better understand MND, its causes and potential treatments to stop the progression of the disease and cure or prevent it. However, this is the largest study of its kind to look at the impact a psychological intervention may have on a patient's quality of life.
Chief investigator Professor Rebecca Gould (UCL Psychiatry) said: "In the absence of a cure for this devastating disease, interventions aimed at helping to improve the psychological wellbeing and quality of life of people living with MND are crucial.
"Poor quality of life and psychological distress are associated with numerous negative outcomes, including shorter survival and increased risk of suicide. Therefore, it is vital that we provide evidence-based interventions to help manage this.
"This study provides strong evidence that Acceptance and Commitment Therapy can be a valuable tool for improving quality of life for the 5,000 people who are currently living with MND in the UK."
The COMMEND study, involved 191 participants across 16 MND Care Centres in the UK. Participants were randomly assigned to receive either ACT plus usual care or usual care alone.
The results were positive, with ACT plus usual care shown to be effective at maintaining or improving quality of life in patients with MND at six and nine months post-randomisation compared to usual care alone. Furthermore, the magnitude of change in quality of life suggested this was a clinically meaningful benefit. Importantly, no adverse events were reported related to the ACT intervention.
ACT is a type of psychological therapy that combines aspects of cognitive behavioural therapy (CBT) with acceptance and mindfulness-based strategies. It emphasises acceptance of difficult feelings and thoughts rather than trying to control or avoid them which can sometimes lead to more distress.
The primary outcome of the trial, which started recruitment in 2019, measured a patient's quality of life using a standardised questionnaire, as well as assessing depression, anxiety and other factors.
Joint lead of the trial, Professor Chris McDermott (University of Sheffield), said: "We desperately need treatments to slow down and stop MND. In a year when several large drug trials have already reported negative results we are reminded what a huge and difficult challenge that is.
"While we work hard for a cure, it is essential we support those living with MND now. The COMMEND study shows that tailored psychological support can have a major impact on the quality of life of those people living with MND."
Chris Bennett, Head of Regional Services and Partnerships at the MND Association, said: "We know many people with MND seek help to cope with the psychological impact of the disease but often this isn't available or, if it is, not in a timely way.
"The COMMEND study shows psychological support can be effective in improving quality of life and that there is clear clinical benefit in Acceptance Commitment Therapy specifically. It is therefore important these findings are taken forward and consideration is given to offering psychological support, such as ACT, within the standard care package to all those who may benefit from it."
The study was funded by the NIHR Health Technology Assessment and the Motor Neurone Disease Association.
