A Pilot Evaluation of Mindfulness-based Cognitive Therapy for People With Huntington's Disease

This is a pilot study to see whether mindfulness-based cognitive therapy, which is a type of psychological therapy, is able to improve the psychological wellbeing of people who have the gene for Huntington's disease.

Study Overview

• Status: Completed
• Conditions: Huntington Disease
• Intervention / Treatment: Other: Mindfulness-based cognitive therapy

Detailed Description

Huntingdon's disease (HD) is a genetic neurodegenerative condition which causes problems with movement, coordination and cognitive functioning, and emotional difficulties are also commonly experienced. It is believed to affect around five to ten in 100,000 people of European descent, with recent UK estimates as high as 11.2-13.5. Each child of an affected person has a 50% chance of inheriting the condition. As age of diagnosis is typically around 35-55, with time from diagnosis to death around 20 years, those who are diagnosed have often seen their parents affected by the condition.

Many people at various stages of HD (including those who carry the gene but are pre-symptomatic) experience low mood, anxiety and other psychological difficulties. Indeed, alongside functional capacity, mood may be one of the main factors which contributes to health related quality of life, more so than discrete motor problems, or cognitive impairment. In addition, reports from patients suggest emotional and social concerns are important for individuals with the condition at the pre-symptomatic stage, and these concerns remain throughout the disease course. Medication may be effective to alleviate psychological difficulties for some people, but its efficacy has not been conclusively proven and it is not suitable for all. Psychological interventions may provide an alternative or additional way of alleviating distress.

Although it is commonly presumed that biological factors are the main determinants of psychological distress in people with HD, several studies have indicated that, while these may indeed be important, psychological factors are also significant. For example beliefs about the disease and coping mechanisms are associated with poorer mental health and higher levels of depression. Such psychological beliefs and coping patterns can be adaptively changed using psychological interventions, for example cognitive-based psychological therapies.

Little progress has been reported on the development of psychological interventions in HD despite the fact that people with HD have expressed an interest in psychological approaches and these are currently being successfully developed for people with other neurological conditions (e.g., in people with Parkinson's disease). It is therefore proposed to pilot mindfulness-based cognitive therapy (MBCT) which, although originally developed to help people with remitted depression from relapse, has been increasingly used to help people with current difficulties. It has also been piloted with people with Parkinson's disease who found it an acceptable intervention and reported improvements in self-management and psychological wellbeing. In general, MBCT has also recorded other gains including improved sleep quality and social functioning. It has also received sufficient evidence for it to be a recommended approach in the UK NICE guidelines for people with a history of depression. MBCT can also reduce anxiety and provides group support. There are also indications that mindfulness training can improve neurocognitive functioning, even in people with neurodegenerative disease. Finally, a psychological therapy subgroup within the European Huntington's Disease Network has recently been formed, thus indicating the rise of interest in psychological approaches and the timely nature of this work.

Hence this study will provide the first indication of whether MBCT, a therapeutic approach with an established evidence base, would be acceptable and useful for people with HD. In order to meet this aim, MBCT will be delivered to two groups, one to individuals who carry the gene but are pre-symptomatic and one to individuals who have begun to experience symptoms but are at an early stage of the disease course.

Approaches to outcome evaluation should be incremental, with lower cost studies, e.g., qualitative investigations and case studies, being conducted before investment in randomised controlled trials is considered. Thus this study will follow this guidance by collecting both qualitative and quantitative data. The qualitative data will be analysed using interpretative phenomenological analysis, a methodology previously used in other qualitative studies on MBCT. Semi-structured interviews will provide data on the acceptability of the intervention and detailed accounts of participants' experience after the intervention has been provided. This will inform whether the MBCT intervention needs to be changed or adapted in further trials. The quantitative data will be used to provide basic pre and post intervention comparisons on a number of outcome variables relevant to MBCT, with the hypothesis that performance on these measures will improve post training. These data will also be used to estimate effect sizes for further trials so that these are suitably powered.

Given the considerable physical, cognitive and emotional consequences of the disease, HD not only affects the person with HD, but also those with whom they live, even in the pre-clinical phase. Family members often become caregivers and can have a reduced quality of life as a result, including experiencing low mood themselves. In fact, caregiver burden and caregiver depression is associated with depression of the person with HD and, alongside motor disturbances, depression of the person with HD is one of the main predictors of caregiver burden. Partners of people with HD can also experience reduced satisfaction with their relationship, sometimes more so than the person with HD themselves.

Thus this study will also investigate the views of a family member (e.g. partner, parent, child) of the person participating in the intervention. As the intervention is aimed at alleviating psychological distress in the person with HD, it is hypothesised that this in turn will also have an effect on the family member's wellbeing. Also, higher levels of mindfulness are associated with higher levels of satisfaction in partner relationships, perhaps due to more adaptive conflict resolution and better emotional recognition and management. Participants in MBCT have reported increased empathy and perspective taking, being more able to respond mindfully in relationships. Thus increased mindfulness of the person with HD may benefit family and social relationships.

In addition, caregivers' views about the symptoms or quality of life of the person with HD may not always match the person with HD themselves. Furthermore, certain symptom changes which are beneficial to the person with HD may not be so to the caregiver, and thus the caregiver can offer an alternative perspective of the wellbeing (including behavioural and psychological changes) of the person with HD.

Both qualitative and quantitative data will be collected from a family member or close friend of the person with HD, where such a person is available and willing to take part. Semi-structured interviews with the family member will explore their perceptions on the acceptability of the intervention and experiences of the person with HD, as well as the impact on the family member personally and the wider family system. Data collected pre and post the intervention will assess any changes in their psychological wellbeing, caregiver burden and family relationships, with the hypothesis that wellbeing and relationships will improve post training and caregiver burden will decrease.

• Study Type: Interventional
• Enrollment (Actual): 16
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United Kingdom
  • Manchester, United Kingdom
    • Central Manchester University Hospitals NHS Foundation Trust

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

Inclusion Criteria:

For those with HD:

Patient at Manchester Centre for Genomic Medicine (UK)

• All participants will have had genetic testing and shown to have the requisite CAG expansion on the huntingtin gene.
• Participants must be pre-symptomatic or at stage 1 (still able to function at home and at work and handle financial affairs)
• Clinical sign of depression (score on HADS of 7 or above)
• No significant medication changes in 6 weeks prior to starting the course

For those who are relatives or friends of those with HD:

• Must be a relative or friend of someone participating in the MBCT course

Exclusion Criteria:

• Active suicidal intent

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Treatment
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: mindfulness-based cognitive therapy	Other: Mindfulness-based cognitive therapy; An 8 week course of mindfulness-based cognitive therapy

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
depression post intervention	Change in Hospital Anxiety and Depression Scale (HADS) depression score pre to post intervention (People with HD only)	immediately post-intervention (up to two weeks afterwards)
depression at 3 months	Change in HADS depression score pre to 3 months post intervention	3 months post-intervention
depression at 1 year	Change in HADS depression score pre to 1 year post intervention	1 year post-intervention

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
depression mid-course	Change in HADS depression score pre to mid-course (4 weeks after start) (people with HD only)	4 weeks after start of intervention
anxiety mid-course	Change in HADS anxiety score pre to mid-course (4 weeks after start) (people with HD only)	4 weeks after start of intervention
anxiety post intervention	Change in HADS anxiety score pre to post-intervention (people with HD only)	immediately post-intervention (up to two weeks afterwards)
anxiety at 3 months	Change in HADS anxiety score pre to 3 months post intervention	3 months post-intervention
anxiety at 1 year	Change in HADS anxiety score pre to 1 year post intervention	1 year post-intervention
stress mid course	Change in Depression Anxiety and Stress Scale (DASS) stress score pre to mid-course (4 weeks after start) (people with HD only)	4 weeks after start of intervention
stress post intervention	Change in DASS stress score pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
stress at 3 months	Change in DASS stress score pre to 3 months post intervention	3 months post-intervention
stress at 1 year	Change in DASS stress score pre to 1 year post intervention	1 year post-intervention
mindfulness mid-course	Change in Five Factor Mindfulness Questionnaire (FFMQ) score pre to mid-course (4 weeks after start) (people with HD only)	4 weeks after start of intervention
mindfulness post intervention	Change in FFMQ score pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
mindfulness at 3 months	Change in FFMQ score pre to 3 months post intervention	3 months post-intervention
mindfulness at 1 year	Change in FFMQ score pre to 1 year post intervention	1 year post-intervention
sleep post intervention	Change in Pittsburgh Sleep Quality Index (PSQI) score pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
sleep at 3 months	Change in PSQI score pre to 3 months post intervention (people with HD only)	3 months post-intervention
sleep at 1 year	Change in PSQI score pre to 1 year post intervention (people with HD only)	1 year post-intervention
quality of life post intervention	Change in World Health Organisation Quality of Life BREF) score (WHOQOL) pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
quality of life at 3 months	Change in WHOQOL score pre to 3 months post intervention	3 months post-intervention
quality of life at 1 year	Change in WHOQOL score pre to 1 year post intervention	1 year post-intervention
positive affect post intervention	Change in Positive And Negative Affect Scale (PANAS) positive items score pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
positive affect at 3 months	Change in PANAS positive items score pre to 3 months post intervention	3 months post-intervention
positive affect at 1 year	Change in PANAS positive items score pre to 1 year post intervention	1 year post-intervention
coping post intervention	Change in brief COPE score pre to post course (people with HD only)	immediately post-intervention (up to two weeks afterwards)
coping at 3 months	Change in brief COPE score pre to 3 months post intervention	3 months post-intervention
coping at 1 year	Change in brief COPE score pre to 1 year post intervention	1 year post-intervention
relationship satisfaction at 3 months	Change in Relationship Assessment Scale (RAS) score pre to 3 months post intervention (relatives/friends only)	3 months post-intervention
relationship satisfaction at 1 year	Change in RAS score pre to 1 year post intervention (relatives/friends only)	1 year post-intervention
carer burden at 3 months	Change in carer burden inventory score pre to 3 months post intervention (relatives/friends only)	3 months post-intervention
carer burden at 1 year	Change in carer burden inventory score pre to 1 year post intervention (relatives/friends only)	1 year post-intervention

Collaborators and Investigators

• Sponsor: Lancaster University
• Collaborators: Manchester University NHS Foundation Trust
• Investigators: Principal Investigator: Jane Simpson, PhD, Lancaster University

Publications and helpful links

General Publications

• Winbush NY, Gross CR, Kreitzer MJ. The effects of mindfulness-based stress reduction on sleep disturbance: a systematic review. Explore (NY). 2007 Nov-Dec;3(6):585-91. doi: 10.1016/j.explore.2007.08.003.
• Fitzpatrick L, Simpson J, Smith A. A qualitative analysis of mindfulness-based cognitive therapy (MBCT) in Parkinson's disease. Psychol Psychother. 2010 Jun;83(Pt 2):179-92. doi: 10.1348/147608309X471514. Epub 2009 Oct 19.
• Teasdale JD, Segal ZV, Williams JM, Ridgeway VA, Soulsby JM, Lau MA. Prevention of relapse/recurrence in major depression by mindfulness-based cognitive therapy. J Consult Clin Psychol. 2000 Aug;68(4):615-23. doi: 10.1037//0022-006x.68.4.615.
• Arran N, Craufurd D, Simpson J. Illness perceptions, coping styles and psychological distress in adults with Huntington's disease. Psychol Health Med. 2014;19(2):169-79. doi: 10.1080/13548506.2013.802355. Epub 2013 Jun 14.
• Aoun, S, Kristjanson, L, Oldham, L.The Challenges and Unmet Needs of People with Neurodegenerative Conditions and their Carers. Journal for Community Nurses, 11(1): 17-20, 2006.
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• Aubeeluck AV, Buchanan H, Stupple EJ. 'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients. Qual Life Res. 2012 Oct;21(8):1425-35. doi: 10.1007/s11136-011-0062-x. Epub 2011 Nov 13.
• Banaszkiewicz K, Sitek EJ, Rudzinska M, Soltan W, Slawek J, Szczudlik A. Huntington's disease from the patient, caregiver and physician's perspectives: three sides of the same coin? J Neural Transm (Vienna). 2012 Nov;119(11):1361-5. doi: 10.1007/s00702-012-0787-x. Epub 2012 Mar 8.
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• Barnhofer T, Crane C, Hargus E, Amarasinghe M, Winder R, Williams JM. Mindfulness-based cognitive therapy as a treatment for chronic depression: A preliminary study. Behav Res Ther. 2009 May;47(5):366-73. doi: 10.1016/j.brat.2009.01.019. Epub 2009 Feb 5.
• Bihari, J, Mullan, E. Relating Mindfully: A Qualitative Exploration of Changes in Relationships Through Mindfulness-Based Cognitive Therapy. Mindfulness 5(1): 46-59, 2014.
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• Craufurd, D, Snowden, JS. Neuropsychiatry and Neuropsychology. In G Bates, SJ Tabrizi, L Jones (Eds.), Huntington's disease (4th ed., pp. 36-65). Oxford: Oxford University Press. (2014)
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• Dobkin RD, Menza M, Allen LA, Gara MA, Mark MH, Tiu J, Bienfait KL, Friedman J. Cognitive-behavioral therapy for depression in Parkinson's disease: a randomized, controlled trial. Am J Psychiatry. 2011 Oct;168(10):1066-74. doi: 10.1176/appi.ajp.2011.10111669. Epub 2011 Jun 15.
• Eisendrath SJ, Delucchi K, Bitner R, Fenimore P, Smit M, McLane M. Mindfulness-based cognitive therapy for treatment-resistant depression: a pilot study. Psychother Psychosom. 2008;77(5):319-20. doi: 10.1159/000142525. Epub 2008 Jul 4. No abstract available.
• Evans SJ, Douglas I, Rawlins MD, Wexler NS, Tabrizi SJ, Smeeth L. Prevalence of adult Huntington's disease in the UK based on diagnoses recorded in general practice records. J Neurol Neurosurg Psychiatry. 2013 Oct;84(10):1156-60. doi: 10.1136/jnnp-2012-304636. Epub 2013 Mar 12.
• Griffiths K, Camic PM, Hutton JM. Participant experiences of a mindfulness-based cognitive therapy group for cardiac rehabilitation. J Health Psychol. 2009 Jul;14(5):675-81. doi: 10.1177/1359105309104911.
• Helder DI, Kaptein AA, Van Kempen GM, Weinman J, Van Houwelingen HC, Roos RA. Living with Huntington's disease: Illness perceptions, coping mechanisms, and patients' well-being. Br J Health Psychol. 2002 Nov;7(Part 4):449-462. doi: 10.1348/135910702320645417.
• Ho AK, Gilbert AS, Mason SL, Goodman AO, Barker RA. Health-related quality of life in Huntington's disease: Which factors matter most? Mov Disord. 2009 Mar 15;24(4):574-8. doi: 10.1002/mds.22412.
• Ho AK, Hocaoglu MB; European Huntington's Disease Network Quality of Life Working Group. Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clin Genet. 2011 Sep;80(3):235-9. doi: 10.1111/j.1399-0004.2011.01748.x. Epub 2011 Aug 4.
• Jha AP, Stanley EA, Kiyonaga A, Wong L, Gelfand L. Examining the protective effects of mindfulness training on working memory capacity and affective experience. Emotion. 2010 Feb;10(1):54-64. doi: 10.1037/a0018438.
• Julien CL, Thompson JC, Wild S, Yardumian P, Snowden JS, Turner G, Craufurd D. Psychiatric disorders in preclinical Huntington's disease. J Neurol Neurosurg Psychiatry. 2007 Sep;78(9):939-43. doi: 10.1136/jnnp.2006.103309. Epub 2006 Dec 18.
• Kaptein, A.A, Helder, DI, Scharloo, M, Van Kempen, GMJ, Weinman, J, Van Houwelingen, HJC, Roos, RAC. Illness perceptions and coping explain well-being in patients with Huntington's disease. Psychology & Health, 21(4): 431-446. (2006)
• Kaptein AA, Scharloo M, Helder DI, Snoei L, van Kempen GM, Weinman J, van Houwelingen JC, Roos RA. Quality of life in couples living with Huntington's disease: the role of patients' and partners' illness perceptions. Qual Life Res. 2007 Jun;16(5):793-801. doi: 10.1007/s11136-007-9194-4. Epub 2007 Mar 21.
• Kay, C, Fisher, E, Hayden, MR. Epidemiology. In G. Bates, S. J. Tabrizi & L. Jones (Eds.), Huntington's disease (4th ed., pp. 131-164). Oxford: Oxford University Press. 2014.
• Lowit A, van Teijlingen ER. Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients. BMC Fam Pract. 2005 Sep 14;6:38. doi: 10.1186/1471-2296-6-38.
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• Pickett T, Altmaier E, Paulsen, JS. Caregiver burden in Huntington's disease. Rehabilitation Psychology 52(3): 311-318. 2007.
• Read J, Jones R, Owen G, Leavitt BR, Coleman A, Roos RA, Dumas EM, Durr A, Justo D, Say M, Stout JC, Tabrizi SJ, Craufurd D; TRACK-HD investigators. Quality of life in Huntington's disease: a comparative study investigating the impact for those with pre-manifest and early manifest disease, and their partners. J Huntingtons Dis. 2013;2(2):159-75. doi: 10.3233/JHD-130051.
• Ready RE, Mathews M, Leserman A, Paulsen JS. Patient and caregiver quality of life in Huntington's disease. Mov Disord. 2008 Apr 15;23(5):721-6. doi: 10.1002/mds.21920.
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• Splevins K, Smith A, Simpson J. Do improvements in emotional distress correlate with becoming more mindful? A study of older adults. Aging Ment Health. 2009 May;13(3):328-35. doi: 10.1080/13607860802459807.
• Teasdale JD, Williams JMG, Segal, ZV. The Mindful Way Workbook: An 8-week Program to Free Yourself from Depression and Emotional Distress. New York, New York: Guildford Press. 2014.
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• Wachs K, Cordova JV. Mindful relating: exploring mindfulness and emotion repertoires in intimate relationships. J Marital Fam Ther. 2007 Oct;33(4):464-81. doi: 10.1111/j.1752-0606.2007.00032.x.
• Williams JK, Hamilton R, Nehl C, McGonigal-Kenney M, Schutte DL, Sparbel K, Birrer E, Tripp-Reimer T, Friedrich R, Penziner E, Jarmon L, Paulsen J. "No one else sees the difference: "family members' perceptions of changes in persons with preclinical Huntington disease. Am J Med Genet B Neuropsychiatr Genet. 2007 Jul 5;144B(5):636-41. doi: 10.1002/ajmg.b.30479.
• Williams JK, Skirton H, Paulsen JS, Tripp-Reimer T, Jarmon L, McGonigal Kenney M, Birrer E, Hennig BL, Honeyford J. The emotional experiences of family carers in Huntington disease. J Adv Nurs. 2009 Apr;65(4):789-98. doi: 10.1111/j.1365-2648.2008.04946.x. Epub 2009 Feb 9.
• Eccles FJR, Craufurd D, Smith A, Davies R, Glenny K, Homberger M, Peeren S, Rogers D, Rose L, Skitt Z, Theed R, Simpson J. A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington's disease. Pilot Feasibility Stud. 2020 Jun 24;6:90. doi: 10.1186/s40814-020-00631-z. eCollection 2020.

Study record dates

Study Major Dates

• Study Start: June 1, 2015
• Primary Completion (Actual): January 31, 2018
• Study Completion (Actual): January 31, 2018

Study Registration Dates

• First Submitted: June 3, 2015
• First Submitted That Met QC Criteria: June 4, 2015
• First Posted (Estimate): June 8, 2015

Study Record Updates

• Last Update Posted (Actual): January 7, 2020
• Last Update Submitted That Met QC Criteria: January 6, 2020
• Last Verified: January 1, 2020

More Information

Terms related to this study

• Keywords: depression; anxiety; stress
• Additional Relevant MeSH Terms: Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Genetic Diseases, Inborn; Basal Ganglia Diseases; Movement Disorders; Neurodegenerative Diseases; Dyskinesias; Heredodegenerative Disorders, Nervous System; Dementia; Cognition Disorders; Chorea; Huntington Disease
• Other Study ID Numbers: EHDN Seed Fund Project 561; 15/NW/0238 (Other Identifier: NHS National Research Ethics Service REC)