Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study

Rebecca L Gould; Charlotte Rawlinson; Ben Thompson; Kirsty Weeks; Rebecca Gossage-Worrall; Hannah Cantrill; Marc A Serfaty; Christopher D Graham; Lance M McCracken; David White; Robert J Howard; Matt Bursnall; Mike Bradburn; Ammar Al-Chalabi; Richard Orrell; Suresh K Chhetri; Rupert Noad; Aleksandar Radunovic; Tim Williams; Carolyn A Young; David Dick; Vanessa Lawrence; Laura H Goldstein; Tracey Young; John Ealing; Hamish McLeod; Nicola Williams; Helen Weatherly; Richard Cave; Theresa Chiwera; Francesco Pagnini; Cindy Cooper; Pamela J Shaw; Christopher J McDermott; and the COMMEND Collaboration Group

doi:10.1186/s40814-023-01354-7

Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study

Pilot Feasibility Stud. 2023 Jul 7;9(1):116. doi: 10.1186/s40814-023-01354-7.

Authors

Rebecca L Gould¹, Charlotte Rawlinson², Ben Thompson³, Kirsty Weeks², Rebecca Gossage-Worrall³, Hannah Cantrill³, Marc A Serfaty^{2

4}, Christopher D Graham⁵, Lance M McCracken⁶, David White³, Robert J Howard², Matt Bursnall³, Mike Bradburn³, Ammar Al-Chalabi⁷, Richard Orrell⁸, Suresh K Chhetri⁹, Rupert Noad¹⁰, Aleksandar Radunovic¹¹, Tim Williams¹², Carolyn A Young¹³, David Dick¹⁴, Vanessa Lawrence¹⁵, Laura H Goldstein¹⁶, Tracey Young¹⁷, John Ealing¹⁸, Hamish McLeod¹⁹, Nicola Williams²⁰, Helen Weatherly²¹, Richard Cave²², Theresa Chiwera⁷, Francesco Pagnini²³, Cindy Cooper³, Pamela J Shaw²⁴, Christopher J McDermott²⁴; and the COMMEND Collaboration Group

Collaborators

and the COMMEND Collaboration Group:
Annmarie Burns, Caroline Dancyger, Annily Dee, Susie Henley, Mark Howell, Naoko Kishita, Selina Makin, Emily Mayberry, Mark Oliver, Alexandra Richards, Emma Robinson, Liz Tallentire

Affiliations

¹ Division of Psychiatry, University College London, Wing B, 6th Floor Maple House, 149 Tottenham Court Rd, London, W1T 7NF, UK. r.gould@ucl.ac.uk.
² Division of Psychiatry, University College London, Wing B, 6th Floor Maple House, 149 Tottenham Court Rd, London, W1T 7NF, UK.
³ Clinical Trials Research Unit, School of Health and Related Research, University of Sheffield, Sheffield, UK.
⁴ Priory Hospital North London, London, UK.
⁵ Strathclyde Psychology, Department of Psychological Sciences & Health, University of Strathclyde, Glasgow, UK.
⁶ Department of Psychology, Uppsala University, Uppsala, Sweden.
⁷ Maurice Wohl Clinical Neuroscience Institute, King's College London, London, UK.
⁸ Department of Clinical and Movement Neurosciences, Institute of Neurology, University College London, London, UK.
⁹ Lancashire Teaching Hospitals NHS Foundation Trust, Lancashire, UK.
¹⁰ Department of Neuropsychology, Derriford Hospital, Plymouth, UK.
¹¹ Barts Health NHS Trust, London, UK.
¹² The Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK.
¹³ The Walton Centre NHS Foundation Trust, Liverpool, UK.
¹⁴ Norfolk and Norwich University Hospital, Norwich, UK.
¹⁵ Health Services & Population Research Department, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
¹⁶ Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
¹⁷ School of Health and Related Research, University of Sheffield, Sheffield, UK.
¹⁸ Manchester Centre for Clinical Neurosciences, Salford Royal NHS Foundation Trust, Salford, UK.
¹⁹ Mental Health and Wellbeing, University of Glasgow, Glasgow, UK.
²⁰ Primary Care Clinical Trials Unit, Oxford University, Oxford, UK.
²¹ Centre for Health Economics, University of York, York, UK.
²² Language and Cognition, University College London, London, UK.
²³ Department of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy.
²⁴ Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK.

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.

Trial registration: The study was pre-registered with the ISRCTN Registry (ISRCTN12655391).

Keywords: Acceptability; Acceptance and Commitment Therapy; Feasibility; Motor neuron disease; Psychological health.

Grants and funding

Gould/Jul17/936-794/MNDA_/Motor Neurone Disease Association/United Kingdom