Acceptance and commitment therapy for people living with motor neuron disease : an uncontrolled feasibility study

Gould, Rebecca L. and Rawlinson, Charlotte and Thompson, Benjamin and Weeks, Kirsty and Gossage-Worrall, Rebecca and Cantrill, Hannah and Serfaty, Marc A. and Graham, Christopher D. and McCracken, Lance M. and White, David and Howard, Robert J. and Bursnall, Matt and Bradburn, Mike and Al-Chalabi, Ammar and Orrell, Richard and Chhetri, Suresh K. and Noad, Rupert and Radunovic, Aleksandar and Williams, Tim and Young, Carolyn A. and Dick, David and Lawrence, Vanessa and Goldstein, Laura H. and Young, Tracey and Ealing, John and McLeod, Hamish and Williams, Nicola and Weatherly, Helen and Cave, Richard and Chiwera, Theresa and Pagnini, Francesco and Cooper, Cindy and Shaw, Pamela J. and McDermott, Christopher J., COMMEND Collaboration Group (2023) Acceptance and commitment therapy for people living with motor neuron disease : an uncontrolled feasibility study. Pilot and Feasibility Studies, 9 (1). 116. ISSN 2055-5784 (https://doi.org/10.1186/s40814-023-01354-7)

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Abstract

Background: Motor neuron disease (MND) is a fatal, progressive neurodegenerative disease that causes progressive weakening and wasting of limb, bulbar, thoracic and abdominal muscles. Clear evidence-based guidance on how psychological distress should be managed in people living with MND (plwMND) is lacking. Acceptance and Commitment Therapy (ACT) is a form of psychological therapy that may be particularly suitable for this population. However, to the authors' knowledge, no study to date has evaluated ACT for plwMND. Consequently, the primary aim of this uncontrolled feasibility study was to examine the feasibility and acceptability of ACT for improving the psychological health of plwMND. Methods: PlwMND aged ≥18 years were recruited from 10 UK MND Care Centres/Clinics. Participants received up to 8 one-to-one ACT sessions, developed specifically for plwMND, plus usual care. Co-primary feasibility and acceptability outcomes were uptake (≥80% of the target sample [N=28] recruited) and initial engagement with the intervention (≥70% completing ≥2 sessions). Secondary outcomes included measures of quality of life, anxiety, depression, disease-related functioning, health status and psychological flexibility in plwMND and quality of life and burden in caregivers. Outcomes were assessed at baseline and 6 months. Results: Both a priori indicators of success were met: 29 plwMND (104%) were recruited and 76% (22/29) attended ≥2 sessions. Attrition at 6-months was higher than anticipated (8/29, 28%), but only two dropouts were due to lack of acceptability of the intervention. Acceptability was further supported by good satisfaction with therapy and session attendance. Data were possibly suggestive of small improvements in anxiety and psychological quality of life from baseline to 6 months in plwMND, despite a small but expected deterioration in disease-related functioning and health status. Conclusions: There was good evidence of acceptability and feasibility. Limitations included the lack of a control group and small sample size, which complicate interpretation of findings. A fully powered RCT to evaluate the clinical and cost-effectiveness of ACT for plwMND is underway.

ORCID iDs

Gould, Rebecca L., Rawlinson, Charlotte, Thompson, Benjamin, Weeks, Kirsty, Gossage-Worrall, Rebecca, Cantrill, Hannah, Serfaty, Marc A., Graham, Christopher D. ORCID logoORCID: https://orcid.org/0000-0001-8456-9154, McCracken, Lance M., White, David, Howard, Robert J., Bursnall, Matt, Bradburn, Mike, Al-Chalabi, Ammar, Orrell, Richard, Chhetri, Suresh K., Noad, Rupert, Radunovic, Aleksandar, Williams, Tim, Young, Carolyn A., Dick, David, Lawrence, Vanessa, Goldstein, Laura H., Young, Tracey, Ealing, John, McLeod, Hamish, Williams, Nicola, Weatherly, Helen, Cave, Richard, Chiwera, Theresa, Pagnini, Francesco, Cooper, Cindy, Shaw, Pamela J. and McDermott, Christopher J.;
CORE (COnnecting REpositories)