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 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.

More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease

“…Although extremely limited, the preliminary evidence available on the adoption of CBT, sensory modulation, progressive relaxation training, and patient education appears promising and should be the subject of further empirical investigations. Similarly, further research is required to confirm the feasibility and potential effectiveness of mindfulnessbased cognitive therapy (MBCT), remotivation therapy, and narrative therapy for issues such as depression, anxiety, distress, and apathy-particularly by exploring different forms of delivery such genetic counselling groups as well as online sessions [50,64,65].…”

Mindfulness-Based Stress Reduction in Pre-symptomatic Genetic Frontotemporal Dementia: A Pilot Study

“…Very few studies have investigated psychological distress in genetic FTD mutation carriers, and were from a biological perspective, presuming that biological factors are the main determinants of neuropsychiatric symptoms in the early stage of FTD ( 13 , 14 ). Yet, similar to what has been reported in premanifest HD individuals, reports from presymptomatic FTD mutation carriers often include emotional and social concerns such as anxiety about when symptoms will manifest, the impact of the disease on self and family, difficulties with acceptance of the disease, lack of support, perceived negative attitudes of others, and limited public awareness ( 15 , 16 ). In the absence of disease-modifying treatment, psychological interventions are necessary that can reduce psychological distress experienced by individuals at-risk of developing FTD.…”

Non-Cell Autonomous and Epigenetic Mechanisms of Huntington’s Disease

“…posttranslational modifications [258], proteostasis [259], autophagy [260,261], redox homeostasis [262], metabolism [263,264], HTT mRNA [265,266], Ca 2+ and dopamine signaling [61], inflammation [267], in vitro modelling of HD [268,269], striatal neurogenesis [270], stem cell treatment [271][272][273][274][275][276][277][278][279], electric stimulation therapy [280], network connectivity in presymptomatic HD brain [281], non-motor symptoms [282], gut microbiome [283], human immunodeficiency virus [284], diagnosis [285,286], clinical progression [287], treatment for the symptoms [288], physical therapy [289], psychological interventions [290,291], and management of agitation [292]. Collectively, the previous studies have potential to reveal spatiotemporal and cell-type specific mechanism of HD pathology.…”