A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington\u2019s disease

Fiona J R Eccles,David Craufurd,Siofra Peeren,Max Homberger,Leona Rose,Zara Skitt,Jane Simpson,Rhys Davies,Kristian Glenny,Rachael Theed,Alistair Smith,Dawn Rogers

doi:10.1186/s40814-020-00631-z

Abstract

BackgroundHuntington’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.MethodsParticipants 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.ResultsTwelve 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.ConclusionsAlthough 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 registrationClinicalTrials.gov identifier NCT02464293, registered 8 June 2015.

Highlights

Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning
While a number of psychological approaches might be useful for individuals affected by HD, this study reports a feasibility assessment of mindfulness-based cognitive therapy (MBCT) for depression, with anxiety and stress, considered as outcome measures
Recruitment rate As pharmaceutical trials which targeted those with early stage HD were ongoing at the same time as this study, the number of potential participants identified by referring clinicians was not as high as originally anticipated

Summary

Introduction

Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. 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. Huntington’s disease (HD) is an inherited neurodegenerative condition, which affects movement, coordination and cognitive functioning, with emotional difficulties commonly experienced. Reports from patients suggest emotional and social concerns are important for individuals with the condition at the pre-manifest stage (e.g. anxiety about symptoms and impact of the condition on self and family, difficulties with acceptance of the condition and selfconfidence, lack of support, perceived negative attitudes of others and limited public awareness) and similar concerns remain throughout the disease course [8]. At least some would prefer not to take it, or to prolong the period without it [11]

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