Psychological therapy shows promise in improving quality of life for people living with motor neuron disease

The largest-ever trial of a psychological intervention for patients with motor neuron disease (MND), conducted by researchers at the University of Sheffield and UCL, 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.

The results of the COMMEND study, published in The Lancet, involved 191 participants across 16 MND Care Centers in the UK. Participants were randomly assigned to receive either ACT plus usual care (UC) or UC alone.

The results were positive, with ACT plus UC shown to be effective at maintaining or improving quality of life in patients with MND at six and nine months post-randomization compared to UC 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 behavioral therapy (CBT) with acceptance and mindfulness-based strategies. It emphasizes 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 standardized questionnaire, as well as assessing depression, anxiety and other factors.

Professor Chris McDermott, Professor of Translational Neurology at the University of Sheffield, Honorary Consultant Neurologist and joint lead of the trial, 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.”

Professor Rebecca Gould, Professor of Psychological Therapies at UCL and Honorary Clinical Psychologist, Chief Investigator of the study and joint lead of the trial, said, “In the absence of a cure for this devastating disease, interventions aimed at helping to improve the psychological well-being 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.”

Study Manager, Benjamin Thompson from the University of Sheffield’s Clinical Trials Research Unit, said, “Recruiting to trials is always challenging, and particularly so with a relatively rare condition like MND. We are delighted to have been able to recruit to our target, making COMMEND the largest clinical trial of a psychological therapy for people with MND.

“This has allowed us to make a significant contribution to the evidence supporting the need for psychological services tailored to the needs of people 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.”