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

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

and the COMMEND Collaboration Group

Research output: Contribution to journal › Article › peer-review

5 Citations (Scopus)

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).

Original language	English
Article number	116
Journal	Pilot and Feasibility Studies
Volume	9
Issue number	1
Early online date	7 Jul 2023
DOIs	https://doi.org/10.1186/s40814-023-01354-7
Publication status	Published - Dec 2023

Keywords

Acceptability
Acceptance and Commitment Therapy
Feasibility
Motor neuron disease
Psychological health

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10.1186/s40814-023-01354-7

Cite this

@article{e412377147d448aab3f8603897baed2f,

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

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",

author = "{and the COMMEND Collaboration Group} and Gould, {Rebecca L.} and Charlotte Rawlinson and Ben Thompson and Kirsty Weeks and Rebecca Gossage-Worrall and Hannah Cantrill and Serfaty, {Marc A.} and Graham, {Christopher D.} and McCracken, {Lance M.} and David White and Howard, {Robert J.} and Matt Bursnall and Mike Bradburn and Ammar Al-Chalabi and Richard Orrell and Chhetri, {Suresh K.} and Rupert Noad and Aleksandar Radunovic and Tim Williams and Young, {Carolyn A.} and David Dick and Vanessa Lawrence and Goldstein, {Laura H.} and Tracey Young and John Ealing and Hamish McLeod and Nicola Williams and Helen Weatherly and Richard Cave and Theresa Chiwera and Francesco Pagnini and Cindy Cooper and Shaw, {Pamela J.} and McDermott, {Christopher J.} and Annmarie Burns and Caroline Dancyger and Annily Dee and Susie Henley and Mark Howell and Naoko Kishita and Selina Makin and Emily Mayberry and Mark Oliver and Alexandra Richards and Emma Robinson and Liz Tallentire",

note = "Funding Information: We would like to thank participants who took part in the study and therapists who delivered the intervention. We would also like to thank members of our Patient Caregiver Advisory Group who attended meetings, provided advice and guidance about key issues, contributed to the development and revision of the intervention manual, and provided feedback on study materials. Finally, we would like to thank members of the Trial Steering Committee and Data Monitoring and Ethics Committee (Professors Carl Clarke, Karen Morrison and Hugh Rickards, and Drs Heather Murray and Robin Young) for their advice and guidance throughout the study. RG, MS and RH are supported by the NIHR University College London Hospitals Biomedical Research Centre at University College London Hospitals NHS Foundation Trust and University College London. MBr, TY, CC, PS and CM are supported by the NIHR Sheffield Biomedical Research Centre. AA-C, VL and LG are supported by the NIHR Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. AA-C is an NIHR Senior Investigator (NIHR202421). This project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1; MR/R024804/1) and Economic and Social Research Council (ES/L008238/1) and through the Motor Neurone Disease Association, My Name{\textquoteright}5 Doddie Foundation, and Alan Davidson Foundation. Individual members of the COMMEND Collaboration Group are (in alphabetical order): Annmarie Burns, Caroline Dancyger, Annily Dee, Susie Henley, Mark Howell, Naoko Kishita, Selina Makin, Emily Mayberry, Mark Oliver, Alexandra Richards, Emma Robinson and Liz Tallentire. Funding Information: This work was supported by the National Institute for Health and Care Research (NIHR) Health Technology Assessment Programme (grant number 16/81/01) and the Motor Neurone Disease Association (grant number Gould/Jul17/936–794). The views expressed are those of the authors and not necessarily those of the National Health Service (NHS), the NIHR or the Department of Health and Social Care. The NIHR commissioned the research and had an initial role in stipulating brief details about the study design. The NIHR and the Motor Neurone Disease Association have not been involved in study design, collection/analysis/interpretation of data or manuscript preparation. Funding Information: RG, MS and RH are supported by the NIHR University College London Hospitals Biomedical Research Centre at University College London Hospitals NHS Foundation Trust and University College London. MBr, TY, CC, PS and CM are supported by the NIHR Sheffield Biomedical Research Centre. AA-C, VL and LG are supported by the NIHR Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. AA-C is an NIHR Senior Investigator (NIHR202421). This project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1; MR/R024804/1) and Economic and Social Research Council (ES/L008238/1) and through the Motor Neurone Disease Association, My Name{\textquoteright}5 Doddie Foundation, and Alan Davidson Foundation. Publisher Copyright: {\textcopyright} 2023, The Author(s).",

year = "2023",

month = dec,

doi = "10.1186/s40814-023-01354-7",

language = "English",

volume = "9",

journal = "Pilot and Feasibility Studies",

issn = "2055-5784",

publisher = "BioMed Central",

number = "1",

}

TY - JOUR

T1 - Acceptance and Commitment Therapy for people living with motor neuron disease

T2 - an uncontrolled feasibility study

AU - and the COMMEND Collaboration Group

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

N1 - Funding Information: We would like to thank participants who took part in the study and therapists who delivered the intervention. We would also like to thank members of our Patient Caregiver Advisory Group who attended meetings, provided advice and guidance about key issues, contributed to the development and revision of the intervention manual, and provided feedback on study materials. Finally, we would like to thank members of the Trial Steering Committee and Data Monitoring and Ethics Committee (Professors Carl Clarke, Karen Morrison and Hugh Rickards, and Drs Heather Murray and Robin Young) for their advice and guidance throughout the study. RG, MS and RH are supported by the NIHR University College London Hospitals Biomedical Research Centre at University College London Hospitals NHS Foundation Trust and University College London. MBr, TY, CC, PS and CM are supported by the NIHR Sheffield Biomedical Research Centre. AA-C, VL and LG are supported by the NIHR Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. AA-C is an NIHR Senior Investigator (NIHR202421). This project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1; MR/R024804/1) and Economic and Social Research Council (ES/L008238/1) and through the Motor Neurone Disease Association, My Name’5 Doddie Foundation, and Alan Davidson Foundation. Individual members of the COMMEND Collaboration Group are (in alphabetical order): Annmarie Burns, Caroline Dancyger, Annily Dee, Susie Henley, Mark Howell, Naoko Kishita, Selina Makin, Emily Mayberry, Mark Oliver, Alexandra Richards, Emma Robinson and Liz Tallentire. Funding Information: This work was supported by the National Institute for Health and Care Research (NIHR) Health Technology Assessment Programme (grant number 16/81/01) and the Motor Neurone Disease Association (grant number Gould/Jul17/936–794). The views expressed are those of the authors and not necessarily those of the National Health Service (NHS), the NIHR or the Department of Health and Social Care. The NIHR commissioned the research and had an initial role in stipulating brief details about the study design. The NIHR and the Motor Neurone Disease Association have not been involved in study design, collection/analysis/interpretation of data or manuscript preparation. Funding Information: RG, MS and RH are supported by the NIHR University College London Hospitals Biomedical Research Centre at University College London Hospitals NHS Foundation Trust and University College London. MBr, TY, CC, PS and CM are supported by the NIHR Sheffield Biomedical Research Centre. AA-C, VL and LG are supported by the NIHR Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. AA-C is an NIHR Senior Investigator (NIHR202421). This project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1; MR/R024804/1) and Economic and Social Research Council (ES/L008238/1) and through the Motor Neurone Disease Association, My Name’5 Doddie Foundation, and Alan Davidson Foundation. Publisher Copyright: © 2023, The Author(s).

PY - 2023/12

Y1 - 2023/12

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

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U2 - 10.1186/s40814-023-01354-7

DO - 10.1186/s40814-023-01354-7

M3 - Article

AN - SCOPUS:85164111031

SN - 2055-5784

VL - 9

JO - Pilot and Feasibility Studies

JF - Pilot and Feasibility Studies

IS - 1

M1 - 116

ER -

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

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