Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study
Authors: Gould Rebecca L. , Rawlinson Charlotte , Thompson Ben , Weeks Kirsty , Gossage-Worrall Rebecca , Cantrill Hannah , Serfaty Marc A. , Graham Christopher D. , 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. , McDermott Christopher J. ,   and the COMMEND Collaboration Group, Burns Annmarie , Dancyger Caroline , Dee Annily , Henley Susie , Howell Mark , Kishita Naoko , Makin Selina , Mayberry Emily , Oliver Mark , Richards Alexandra , Robinson Emma , Tallentire Liz 
Published: July 2023

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).