TY - JOUR
T1 - Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study
AU - Gould, Rebecca L.
AU - Rawlinson, Charlotte
AU - Thompson, Ben
AU - Weeks, Kirsty
AU - Gossage-Worrall, Rebecca
AU - Cantrill, Hannah
AU - Serfaty, Marc A.
AU - Graham, Christopher D.
AU - Mccracken, Lance M.
AU - White, David
AU - Howard, Robert J.
AU - Bursnall, Matt
AU - Bradburn, Mike
AU - Al-Chalabi, Ammar
AU - Orrell, Richard
AU - Chhetri, Suresh K.
AU - Noad, Rupert
AU - Radunovic, Aleksandar
AU - Williams, Tim
AU - Young, Carolyn A.
AU - Dick, David
AU - Lawrence, Vanessa
AU - Goldstein, Laura H.
AU - Young, Tracey
AU - Ealing, John
AU - Mcleod, Hamish
AU - Williams, Nicola
AU - Weatherly, Helen
AU - Cave, Richard
AU - Chiwera, Theresa
AU - Pagnini, Francesco
AU - Cooper, Cindy
AU - Shaw, Pamela J.
AU - Mcdermott, Christopher J.
AU - Burns, Annmarie
AU - Dancyger, Caroline
AU - Dee, Annily
AU - Henley, Susie
AU - Howell, Mark
AU - Kishita, Naoko
AU - Makin, Selina
AU - Mayberry, Emily
AU - Oliver, Mark
AU - Richards, Alexandra
AU - Robinson, Emma
AU - Tallentire, Liz
PY - 2023
Y1 - 2023
N2 - 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).
AB - 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).
KW - Acceptability
KW - Acceptance and Commitment Therapy
KW - Feasibility
KW - Motor neuron disease
KW - Psychological health
KW - Acceptability
KW - Acceptance and Commitment Therapy
KW - Feasibility
KW - Motor neuron disease
KW - Psychological health
UR - http://hdl.handle.net/10807/273654
U2 - 10.1186/s40814-023-01354-7
DO - 10.1186/s40814-023-01354-7
M3 - Article
SN - 2055-5784
VL - 9
SP - 1
EP - 15
JO - Pilot and Feasibility Studies
JF - Pilot and Feasibility Studies
ER -