A brief acceptance and commitment therapy intervention for individuals at risk of neurodegenerative disease: A translational study in inherited prion disease
5 affiliations
- 1Research Department of Clinical, Educational and Health Psychology, University College London, London, UK
- 2Department of Medicine, Baylor College of Medicine, Houston, TX, USA
- 3MRC Prion Unit at UCL, Institute of Prion Disease, London, UK; National Prion Clinic, University College London Hospitals NHS Foundation Trust, London, UK
- 4CJD Support Network, UK (Charity No. 1097173), UK
- 5National Prion Clinic, University College London Hospitals NHS Foundation Trust, London, UK; Department of Neuropsychology, National Hospital for Neurology and Neurosurgery, UCLH, London, UK; Department of Translational Neuroscience and Stroke, UCL Queen Square Institute of Neurology, University College London, London, UK; Corresponding author.
Abstract
Living at risk of a neurodegenerative condition such as inherited prion disease (IPD) is associated with substantial psychological burden, yet evidence-based supportive interventions are lacking. This unmet need is likely to grow as advances in biomarkers and predictive testing lead to increasing identification of individuals in pre-symptomatic stages of neurodegenerative disease. Acceptance and Commitment Therapy (ACT), a transdiagnostic intervention targeting psychological flexibility, has shown promise in chronic health contexts but has not been evaluated in individuals at genetic risk. Inherited prion disease was used as a model population to examine acceptability, feasibility and preliminary therapeutic effects in a rare neurogenetic context. The intervention comprised a single 5-h, face-to-face group workshop followed by an individual booster session. Prespecified feasibility and acceptability criteria were assessed alongside secondary psychological outcomes at baseline, 1 month, and 3 months post-intervention, complemented by semi-structured qualitative interviews. Twenty-three participants completed the intervention. All predefined feasibility criteria were met, including recruitment (58%), intervention completion (80%), retention at 3 months (79%), and low missing data (10%). Acceptability was high, with all participants reporting the intervention as useful and appropriate. Quantitative analyses demonstrated improvements in psychological quality of life and behavioural awareness at 3 months, with larger effects observed in participants with elevated baseline depressive symptoms. Qualitative findings highlighted the importance of peer connection, experiential learning, and practical strategies for managing uncertainty. These findings provide support for a scalable psychological intervention that may address cost and time barriers and represent an important component of future neurotherapeutic care.
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BibTeX
@article{brien2026brief,
title = {{A brief acceptance and commitment therapy intervention for individuals at risk of neurodegenerative disease: A translational study in inherited prion disease}},
author = {Rhianna Brien and Lilian Dindo and Rachel Williams and Lucy Pauli and Beth Marsh and John Collinge and Simon Mead and Edgar Chan},
journal = {Neurotherapeutics},
year = {2026},
month = oct,
doi = {10.1016/j.neurot.2026.e01079},
url = {https://doi.org/10.1016/j.neurot.2026.e01079},
note = {CC BY},
}
RIS
TY - JOUR
TI - A brief acceptance and commitment therapy intervention for individuals at risk of neurodegenerative disease: A translational study in inherited prion disease
AU - Rhianna Brien
AU - Lilian Dindo
AU - Rachel Williams
AU - Lucy Pauli
AU - Beth Marsh
AU - John Collinge
AU - Simon Mead
AU - Edgar Chan
PY - 2026
DA - 2026/10/24
JO - Neurotherapeutics
DO - 10.1016/j.neurot.2026.e01079
UR - https://doi.org/10.1016/j.neurot.2026.e01079
AB - Living at risk of a neurodegenerative condition such as inherited prion disease (IPD) is associated with substantial psychological burden, yet evidence-based supportive interventions are lacking. This unmet need is likely to grow as advances in biomarkers and predictive testing lead to increasing identification of individuals in pre-symptomatic stages of neurodegenerative disease. Acceptance and Commitment Therapy (ACT), a transdiagnostic intervention targeting psychological flexibility, has shown promise in chronic health contexts but has not been evaluated in individuals at genetic risk. Inherited prion disease was used as a model population to examine acceptability, feasibility and preliminary therapeutic effects in a rare neurogenetic context. The intervention comprised a single 5-h, face-to-face group workshop followed by an individual booster session. Prespecified feasibility and acceptability criteria were assessed alongside secondary psychological outcomes at baseline, 1 month, and 3 months post-intervention, complemented by semi-structured qualitative interviews. Twenty-three participants completed the intervention. All predefined feasibility criteria were met, including recruitment (58%), intervention completion (80%), retention at 3 months (79%), and low missing data (10%). Acceptability was high, with all participants reporting the intervention as useful and appropriate. Quantitative analyses demonstrated improvements in psychological quality of life and behavioural awareness at 3 months, with larger effects observed in participants with elevated baseline depressive symptoms. Qualitative findings highlighted the importance of peer connection, experiential learning, and practical strategies for managing uncertainty. These findings provide support for a scalable psychological intervention that may address cost and time barriers and represent an important component of future neurotherapeutic care.
SN - 1878-7479
SN - 1933-7213
ER -