A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease

Abstract Background Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We inv...

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Main Authors: Fiona J. R. Eccles, David Craufurd, Alistair Smith, Rhys Davies, Kristian Glenny, Max Homberger, Siofra Peeren, Dawn Rogers, Leona Rose, Zara Skitt, Rachael Theed, Jane Simpson
Format: Article
Language:English
Published: BMC 2020-06-01
Series:Pilot and Feasibility Studies
Subjects:
Online Access:http://link.springer.com/article/10.1186/s40814-020-00631-z
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author Fiona J. R. Eccles
David Craufurd
Alistair Smith
Rhys Davies
Kristian Glenny
Max Homberger
Siofra Peeren
Dawn Rogers
Leona Rose
Zara Skitt
Rachael Theed
Jane Simpson
author_facet Fiona J. R. Eccles
David Craufurd
Alistair Smith
Rhys Davies
Kristian Glenny
Max Homberger
Siofra Peeren
Dawn Rogers
Leona Rose
Zara Skitt
Rachael Theed
Jane Simpson
author_sort Fiona J. R. Eccles
collection DOAJ
description Abstract Background Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We investigated the feasibility of conducting a randomised controlled trial (RCT) of mindfulness-based cognitive therapy (MBCT) with people with the HD genetic mutation, either pre-manifest (before onset of movement symptoms) or at an early disease stage. Specifically, we evaluated the willingness of participants to be recruited into and complete the intervention; the acceptability of the study measures in relation to completion; the feasibility of offering the standard MBCT course to people with HD; the acceptability of the intervention and the estimated effect sizes. Methods Participants were recruited from two UK HD centres and took part in an 8-week course of MBCT, with three reunions throughout the following year. Stress, depression, anxiety, and mindfulness were measured pre-, mid-, and post-course, at 3 months and at 1 year. Sleep, quality of life, positive affect and coping were measured pre- and post-course, at 3 months and at 1 year. Descriptive data and approximate effect sizes were calculated. Interviews were conducted post-course and at 1 year and data pertaining to the acceptability of the course were extracted. Results Twelve participants took part in two groups; all were pre-manifest. Levels of depression and anxiety were low pre-course leaving little room for improvement. Changes in stress and in some aspects of mindfulness were medium to large. The qualitative data suggested participants rated the course highly and found it helpful and no changes to the standard course were needed. Recruitment levels were below those anticipated. Most measures were found to be acceptable. Conclusions Although the course was acceptable to those who took part, given the difficulties in recruiting and the rarity of HD, conducting an RCT of MBCT teaching groups in person does not seem feasible. However, alternative modes of course delivery (e.g. online) would allow the recruitment of people from a greater geographical area and may make an RCT feasible; this revised focus would be suitable for future feasibility studies. Trial registration ClinicalTrials.gov identifier NCT02464293 , registered 8 June 2015.
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spelling doaj.art-b1a3a2b2af5c4760bedcfb71153a03372022-12-22T00:58:24ZengBMCPilot and Feasibility Studies2055-57842020-06-016111310.1186/s40814-020-00631-zA feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s diseaseFiona J. R. Eccles0David Craufurd1Alistair Smith2Rhys Davies3Kristian Glenny4Max Homberger5Siofra Peeren6Dawn Rogers7Leona Rose8Zara Skitt9Rachael Theed10Jane Simpson11Division of Health Research, Faculty of Health and Medicine, Lancaster UniversityDivision of Evolution and Genomic Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, University of ManchesterDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityThe Walton Centre NHS Foundation TrustDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityDivision of Evolution and Genomic Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, University of ManchesterDivision of Evolution and Genomic Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, University of ManchesterDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityDivision of Evolution and Genomic Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, University of ManchesterDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityDivision of Health Research, Faculty of Health and Medicine, Lancaster UniversityAbstract Background Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We investigated the feasibility of conducting a randomised controlled trial (RCT) of mindfulness-based cognitive therapy (MBCT) with people with the HD genetic mutation, either pre-manifest (before onset of movement symptoms) or at an early disease stage. Specifically, we evaluated the willingness of participants to be recruited into and complete the intervention; the acceptability of the study measures in relation to completion; the feasibility of offering the standard MBCT course to people with HD; the acceptability of the intervention and the estimated effect sizes. Methods Participants were recruited from two UK HD centres and took part in an 8-week course of MBCT, with three reunions throughout the following year. Stress, depression, anxiety, and mindfulness were measured pre-, mid-, and post-course, at 3 months and at 1 year. Sleep, quality of life, positive affect and coping were measured pre- and post-course, at 3 months and at 1 year. Descriptive data and approximate effect sizes were calculated. Interviews were conducted post-course and at 1 year and data pertaining to the acceptability of the course were extracted. Results Twelve participants took part in two groups; all were pre-manifest. Levels of depression and anxiety were low pre-course leaving little room for improvement. Changes in stress and in some aspects of mindfulness were medium to large. The qualitative data suggested participants rated the course highly and found it helpful and no changes to the standard course were needed. Recruitment levels were below those anticipated. Most measures were found to be acceptable. Conclusions Although the course was acceptable to those who took part, given the difficulties in recruiting and the rarity of HD, conducting an RCT of MBCT teaching groups in person does not seem feasible. However, alternative modes of course delivery (e.g. online) would allow the recruitment of people from a greater geographical area and may make an RCT feasible; this revised focus would be suitable for future feasibility studies. Trial registration ClinicalTrials.gov identifier NCT02464293 , registered 8 June 2015.http://link.springer.com/article/10.1186/s40814-020-00631-zHuntington’s diseaseMindfulnessDepressionAnxietyStress
spellingShingle Fiona J. R. Eccles
David Craufurd
Alistair Smith
Rhys Davies
Kristian Glenny
Max Homberger
Siofra Peeren
Dawn Rogers
Leona Rose
Zara Skitt
Rachael Theed
Jane Simpson
A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
Pilot and Feasibility Studies
Huntington’s disease
Mindfulness
Depression
Anxiety
Stress
title A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
title_full A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
title_fullStr A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
title_full_unstemmed A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
title_short A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease
title_sort feasibility investigation of mindfulness based cognitive therapy for people with huntington s disease
topic Huntington’s disease
Mindfulness
Depression
Anxiety
Stress
url http://link.springer.com/article/10.1186/s40814-020-00631-z
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