While we work hard for a cure, it is essential we support those living with MND now.
Professor Chris McDermott, Professor of Translational Neurology at the University of Sheffield, trial co-lead
Maintaining quality of life and supporting psychological well-being are critical for individuals living with MND. However, there has been very little research on how best to provide this care. The COMMEND study was the largest-ever trial of psychological intervention for people living with MND. Led by Professor Rebecca Gould (pictured left) at University College London (UCL), COMMEND aimed to address the knowledge gap by investigating the potential benefits of a type of intervention known as Acceptance and Commitment Therapy (ACT). Results of the study were published last month (June 2024) in the highly regarded journal, The Lancet.
What is Acceptance and Commitment Therapy for MND?
ACT is a psychological therapy that helps people to live meaningful lives despite difficult thoughts, feelings and circumstances. It has shown promise in improving the quality of life and psychological well-being of people with long-term, incurable conditions such as chronic pain and muscle disorders. The COMMEND study aimed to see whether quality of life could be improved for people with MND if they were given an adapted version of ACT, specifically designed for their needs. The study was carried out in 3 phases.
The Three Phases of the COMMEND Study
Phase 1: Developing the Intervention
The first phase involved conversations with people living with MND, their caregivers and healthcare professionals to understand what type of psychological help would be useful. Insights from these discussions guided the development of an adapted ACT intervention designed to address the unique challenges faced by people with MND.
Phase 2: Pilot Testing
In the second phase, the adapted ACT intervention was tested for its acceptability and feasibility in a small pilot study. The findings indicated that the intervention was well-received by participants and could therefore be tested in a larger clinical trial.
Phase 3: Clinical Trial
The third phase was a clinical trial that examined the effectiveness of adapted ACT plus standard care in improving quality of life for people with MND. This combined therapy was compared to standard care alone. A total of 191 participants were enrolled in the trial between September 2019 and August 2022. Trial participants were randomly assigned to receive either up to eight one-hour sessions of adapted ACT from trained psychological therapists alongside standard care or standard care alone. Quality of life, mood, coping, functioning and health status were assessed through questionnaires at the start of the trial and again at 6 and 9 months.
Key Findings
Quality of Life
A meaningful difference in quality of life was observed between the adapted ACT group and the group that received only standard care at both 6 and 9 months. Approximately two-thirds of those who received adapted ACT reported stable or improved quality of life compared to only one-third in the standard care group.
I can now be the person I want to be whilst living with MND…I intend to spend the rest of my life concentrating on what matters to me and this disease.
Study participant
Depression and Coping
The adapted ACT group showed improvements in depression and coping abilities at 6 and 9 months compared to the standard care group.
…it gave me some coping strategies and the ability to address problems from a different perspective.
Helped me accept the diagnosis and how to handle it psychologically.
Study participants
Participant Satisfaction
People who received the adapted ACT expressed high levels of satisfaction with it, highlighting its value in providing emotional support, coping strategies and helping with acceptance of their condition.
It is very valuable to MND sufferers to have an outlet for their inner thoughts.
Study participant
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Future Directions
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.
Professor Rebecca Gould, Chief Investigator of the study
Incorporating ACT into standard care for MND patients is a potential avenue for improving psychological well-being. The MND Association has committed to collaborate with the study team to offer online training for therapists, increasing the likelihood that more people will be able to benefit from the therapy.
Currently, however, psychological therapy is not a routine part of standard care in MND clinics. The MND Association has been funding pilot psychology posts to show the difference access to psychology can make to people living with MND. However, services across the UK have developed in different ways and it has been difficult to gather enough evidence to convince NHS funders to keep psychology services running. The results from the COMMEND study provide a good starting point and the necessary evidence to highlight the importance of psychological support. To gather additional evidence, the MND Association is funding a 2-year project, called iDeliver.
iDeliver MND: Improving the Delivery of Psychological Care in MND
iDeliver, launched in March 2024 and led by Dr Emily Mayberry (pictured left) at the University of Sheffield, aims to identify the key priorities in psychological care for people with MND. Evidence will be gathered from people living with MND, their carers and health care professionals. The research team will map and explore how psychology services are currently being delivered, funded and evaluated, what is working well and what can be improved. Based on the findings, the research team will develop guidelines about how best to set up services. This will enable the delivery of better psychological support, ultimately helping more people to access the care they need across the UK. Recommendations to come out of the study will be used to inform updates to the National Institute for Health and Care Excellence (NICE) guidelines and make a strong case to funders about the value of these services.
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Acknowledgements
The COMMEND study was made possible by the invaluable participation of individuals living with MND, caregivers and healthcare professionals. The study was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment and the MND Association.
iDeliver is funded by the MND Association with generous support from the Grace Trust.
