Prior to this study, there was very little known about improving the quality of life for those diagnosed with motor neuron disease, a fatal neurological condition with an average life expectancy of two to four years. In this progressive disease, the motor neurons in the cortex and spinal cord degenerate, resulting over time in limb paralysis, speech problems, the inability to swallow, and respiratory failure.

Globally, motor neuron disease affects 4.5 people per 100,000 (Logroscino et al, 2018). The term “motor neuron disease” includes those with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), progressive muscular atrophy, and primary lateral sclerosis.

In an attempt to consider whether quality of life might be improved for those diagnosed with a motor neuron disease, Gould, McDermott, and colleagues evaluated the effectiveness of Acceptance and Commitment Therapy (ACT) plus usual care, as compared with usual care alone. ACT is a psychological approach that incorporates acceptance, mindfulness, and behaviour change techniques.

The authors of this study include over thirty psychiatrists, psychologists, medical doctors, clinicians, and other researchers at University College London, the University of Sheffield, and several other universities and clinical settings throughout the United Kingdom and Sweden.

Methods

This powerful randomised controlled intervention study was conducted at 16 motor neuron disease care settings across the UK. 435 individuals diagnosed with motor neuron disease were approached, resulting in 191 people who met eligibility criteria, and 139 who completed the study. Their sex roughly matched population incidence of the disease: 58% male, 42% female; and the ages ranged from 28 to 92, with a mean age of 63 (SD=11).

Participants randomly assigned to the treatment group received up to eight one-hour sessions of ACT adapted for people with motor neuron disease, plus usual care. Those in the control group received usual care alone. All participants and their caregivers were followed up at 6 months and 9 months with multiple measures of well-being adapted for those with motor neuron disease.

Results

Primary outcome analysis showed solid treatment benefits for Acceptance and Commitment Therapy (ACT), a psychological treatment focused on acceptance, mindfulness, and behaviour change techniques. When compared with usual care alone, ACT plus usual care was superior at each of the two assessment periods, with an adjusted mean difference on the McGill Quality of Life Questionnaire-Revised (MQOL-R) of 0·66 (95% CI 0·22 to 1·10) at 6 months (d=0·46 [95% CI 0·16 to 0·77]; p=0·0031); and 0·76 (95% CI 0·30 to 1·22) and at 9 months (d=0·53 [95% CI 0·21 to 0·85]; p=0·0011).

Secondary outcome analyses showed several specific benefits for participants in the treatment group as compared with those in the control group. On the Psychological subscale of the MQOL-R, differences favoured those receiving ACT at both 6 months post-randomisation, with an adjusted mean difference of 0·71 (95% CI 0·02 to 1·39) (d=0·30 [95% CI 0·01 to 0·60]; p= 0·043), and at 9 months, when the adjusted mean difference was 1·10 (95%CI 0·40 to 1·80) (d=0·47 [95%CI 0·17 to 0·78]; p=0·0020).

Similarly on the Existential subscale of the MQOL-R, differences favoured those receiving ACT at both 6 months post-randomisation, with an adjusted mean difference of 0·72 (95% CI 0·23 to 1·20) (d=0·43 [95% CI 0·14 to 0·73]; p= 0·0042), and at 9 months, when the adjusted mean difference was 0·65 (95%CI 0·09 to 1·21) (d=0·39 [95%CI 0·05 to 0·73]; p=0·023).

There were benefits for the treatment group at 9 months on the Acceptance and Action Questionnaire-II, an assessment of psychological inflexibility. The adjusted mean difference was –2·54 (95% CI –4·52 to –0·55) (d=  –0·28 [95% CI –0·50 to –0·06]; p= 0·012.

There were also differences at 6 months post-randomisation between the treatment and control groups on the Visual Analogue Scale, an assessment of health status: the adjusted mean difference was 6·49 (95% CI 1·28 to 11·7) (d= 0·30 [95% CI 0·06 to 0·54]; p= 0·015.

Finally, logistic regression analyses showed that participants in the treatment group were less likely to progress to case levels of depression on the modified Hospital Anxiety and Depression Scale. The chance of transitioning from non-case to case level at 6 months post-randomisation was 11% lower in the ACT plus usual care group compared with the usual care alone group (risk difference –0·11 [95% CI –0·22 to –0·01]; p=0·044).

No other significant between-group differences were observed.

I found all of the Tables and Figures in this report to be thoughtfully designed for meaningful communication. As one example of this, Figure 2 offers a compelling visual illustration of the benefits of ACT. As compared with those in the control group, participants in the treatment group were more psychologically flexible, had better disease-related functioning, better health status, less depression and anxiety, and better quality of life than those who received usual care alone.

Conclusions

This is a landmark study for those affected by motor neuron disease, the first adequately powered randomised controlled trial of a psychological intervention for this serious, debilitating, and fatal disease. The researchers found that:

ACT plus usual care was superior to usual care alone for maintaining or improving quality of life in people with motor neuron disease.

This study shows that Acceptance and Commitment Therapy can be safely offered to those with motor neuron disease. Participants may achieve better health status and a better quality of life, as well as a reduced likelihood of experiencing depression and anxiety.

Strengths and limitations

As the first powerful randomised controlled intervention study of a psychological approach to motor neuron disease, this study provides practitioners with an approach that addresses the emotional and psychological dimensions of this debilitating, progressive, and fatal disease. Practitioners finally have a treatment they can recommend that has been shown to have important benefits to patients’ quality of life.

In demonstrating the benefits of Acceptance and Commitment Therapy (a psychological approach that combines acceptance, mindfulness, and behaviour change techniques) for those with motor neuron disease, this is a promising study for those who experience the impact of a neurodegenerative disease that usually results in death in two to four years.

There are, however, limitations to the generalisability of the findings. Most importantly, perhaps, study respondents tended to be early in their disease course. Two-thirds of participants were less than a year post-diagnosis, and their functional impairment was fairly mild on average. A relatively small percentage were clinically depressed (9%, 18 of 191) or anxious (21%, 41 of 191) on the modified Hospital Anxiety and Depression Scale. Additionally, those at the most advanced disease stage were excluded from the study. The findings therefore may or may not apply to those who are farther along in the disease process.

Another limitation to the generalisability of these findings is that most participants (97%, 185/191) self-identified as White or White British. The authors of the study don’t provide a reason for the under-representation of ethnic minorities, although there is evidence showing that White people have a higher incidence of motor neuron disease than others (Burchardt, Mei, et al., 2022).

A third limitation is that ACT was compared to a non-active control condition. Between-group differences might therefore have been attributable to factors like increased attention or social support rather than the intervention itself.

Finally, this study terminated at 9 months post-randomisation. We don’t know how long the benefits held, or whether they might continue to accrue over time.

Implications for practice

I know from personal experience how devastating it can feel to be diagnosed with a degenerative motor disorder, although my diagnosis—rheumatoid arthritis—is not as debilitating or severe as motor neuron disease, nor is it fatal. I can only try to imagine how challenging it must be for those diagnosed with motor neuron disease that not only involves increasing incapacitation but is also likely to lead to death within two to four years.

Up until now, practitioners working with motor neuron disease have not been able to offer any proven approaches to helping patients resist being overwhelmed by the situation they find themselves in. For the first time, there is now a psychological treatment that has proven benefits for those in the early to middle stages of the disease. Acceptance and Commitment Therapy provides hope to all those affected by it, including patients, practitioners, caregivers, friends, and relatives. Based on the findings reported here, we can conclude that ACT should be offered by all treatment centres along with therapies that support the medical and physical aspects of patients’ condition.

It happened that this study was interrupted by changing treatment protocols during COVID-19. One benefit from this unexpected shift in plans, resulting in 86% (547 of 635) of sessions being delivered by video call, was that researchers were able to demonstrate the feasibility of remote intervention delivery. This means that even patients who experience hardships getting to treatment facilities, including those who live in remote areas as well as those whose impairment renders travel too onerous, can benefit from ACT.

I found the lack of ethnic diversity in this study to be striking, particularly because the study was so thoughtfully well-designed. Was there something in the way research subjects were recruited that led to non-White motor neuron disease patients excluding themselves? Maybe something about the ethnic make-up of the treatment centres that participated in the study? Perhaps the lack of diversity reflects differing cultural attitudes toward psychological interventions for a serious medical condition? Regardless of how it happened that 97% of participants in this study were White, it would be good to know more about the treatment efficacy for people of other ethnicities.

This study ended at 9 months post-randomisation, with results showing strong benefits across many indicators of patients’ well-being. Further research is needed to investigate whether those benefits diminish over time, are maintained, or increase. Connected questions include whether ongoing ACT increases the benefits, and/or how its effects might change over the course of the disease.

Statement of interests

I have no conflicting interests connected to any aspect of this study.

Links

Primary paper

Rebecca L Gould, Christopher J McDermott, Benjamin J Thompson, et al on behalf of the COMMEND Collaboration Group (2024). Acceptance and Commitment Therapy plus usual care for improving quality of life in people with motor neuron disease: A multicentre, parallel, randomised controlled trial in the UK. The Lancet, Volume 403, Issue 10442, 2381 – 2394

Other references

Logroscino, Giancarlo et al. (2018) Global, regional, and national burden of motor neuron diseases 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, Volume 17, Issue 12, 1083 – 1097.

Burchardt J, Mei X. et al. (2022). Analysis of incidence of motor neuron disease in England 1998–2019: use of three linked datasets.

Photo credits

• Photo by Simon Wilkeson Unsplash
• Photo by Marisa Howenstineon Unsplash
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• Photo by Monica Meltonon Unsplash