Abstract
People with Huntington’s disease (HD) face difficult emotional and practical challenges throughout their illness, including in the pre-symptomatic stage. There are, however, extremely limited psychosocial interventions adapted to or researched for HD. We adapted and piloted an 8-week mindfulness-based stress reduction (MBSR) program in people with pre-symptomatic HD to determine if the program (i) was feasible and acceptable to participants, (ii) resulted in increased mindfulness understanding and skills, and (iii) led to improved psychological adjustment. Quantitative measures of mindfulness, emotion regulation, mood, and quality of life were administered pre and post the MBSR program and at 3-month follow-up. Measures of mindfulness practice and session clarity were administered weekly. Qualitative participant feedback was collected with a post-program interview conducted by independent clinicians. Seven participants completed the 8-week course. The program’s feasibility and acceptability was supported by excellent retention and participation rates and acceptable rates of home practice completion. In addition, qualitative feedback indicated participant satisfaction with the program structure and content. Two core mindfulness skills (observing and non-judgment) showed significant improvement from pre- to post-assessment. Participant qualitative feedback indicated increased confidence and capacity to use mindfulness techniques, particularly in emotionally challenging situations. Participant questionnaire data showed good psychological adjustment at baseline, which did not change after treatment. Psychological benefits of the program identified in qualitative data included fewer ruminations about HD, reduced isolation and stigma, and being seen by others as calmer. These findings justify expansion of the program to determine its efficacy in a larger, controlled study.
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Acknowledgements
Thank you to Ruth Hosken and Lisa Mottram who provided invaluable support with participant recruitment, screening, and program evaluation. Kate Prowd contributed significantly to program facilitation and organization. We are also grateful to Professor Peter Norton and Dr. Richard Chambers for their assistance with design of the project and to Hannah Barnes and Tiffany Falcone for their research assistance.
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The study’s conception and design involved Cathy Gluyas, Julie Stout, and Fiona Fisher. Sarah Velissaris wrote the initial version of the manual. This was adapted by Fiona Fisher, Cathy Gluyas, and Marie-Claire Davis during running of the program. Marie-Claire Davis supervised data collection and conducted the quantitative analysis with Sarah Velissaris. The qualitative analysis was completed by Sarah Velissaris and Cathy Gluyas. The draft of the manuscript was written by Sarah Velissaris and Cathy Gluyas, and all authors commented, refined, and approved the final manuscript.
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Ethical approval for the study was granted by the Research Ethics Committee at Calvary Health Care Bethlehem (ref: 16121501) and Monash University Human Research Ethics Committee. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).
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Velissaris, S., Davis, MC., Fisher, F. et al. A pilot evaluation of an 8-week mindfulness-based stress reduction program for people with pre-symptomatic Huntington’s disease. J Community Genet 14, 395–405 (2023). https://doi.org/10.1007/s12687-023-00651-1
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DOI: https://doi.org/10.1007/s12687-023-00651-1