A pilot evaluation of an 8-week mindfulness-based stress reduction program for people with pre-symptomatic Huntington's disease

Sarah Velissaris; Marie-Claire Davis; Fiona Fisher; Cathy Gluyas; Julie C Stout

doi:10.1007/s12687-023-00651-1

A pilot evaluation of an 8-week mindfulness-based stress reduction program for people with pre-symptomatic Huntington's disease

J Community Genet. 2023 Aug;14(4):395-405. doi: 10.1007/s12687-023-00651-1. Epub 2023 Jul 17.

Authors

Sarah Velissaris¹, Marie-Claire Davis², Fiona Fisher², Cathy Gluyas², Julie C Stout³

Affiliations

¹ Statewide Progressive Neurological Disease Service, Calvary Health Care Bethlehem, 476 Kooyong Rd., South Caulfield, 3162, VIC, Australia. sarah.velissaris@calvarycare.org.au.
² Statewide Progressive Neurological Disease Service, Calvary Health Care Bethlehem, 476 Kooyong Rd., South Caulfield, 3162, VIC, Australia.
³ The Turner Institute for Brain and Mental Health, School of Psychological Sciences, Monash University, Melbourne, Australia.

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.

Keywords: Depression; Huntington’s disease; Mindfulness; Pre-symptomatic; Psychological interventions; Quality of life.