Development of a community-based exercise program for people diagnosed and at-risk for Huntington’s disease: A clinical report

ABSTRACT

Background: Given the neurodegenerative nature of Huntington’s disease (HD), community-based exercise programs that meet the ongoing needs of those living with HD are needed. The genetic nature of HD warrants the inclusion of those at-risk for HD. The purpose of this clinical report is to describe an evidence-based approach to the design of a community-based exercise program to improve gait, balance, and fatigue for individuals diagnosed with and at-risk for HD. Program Design: Based on the literature, clinical expertise and patient values, the program was designed to include four key features: (1) community-based group format for individuals with HD, caregivers, and those at-risk for HD; (2) individualized prescription within the group; (3) circuit training; and (4) use of outcome measures. Program Implementation and Outcomes: The group met once weekly for 8 weeks for balance, strength, and cardiovascular fitness exercises. Three individuals participated, two diagnosed with HD and 1 considered “at-risk” for HD. Pre- and post- outcome measures included the 10 meter walk test, Berg Balance Scale, Fatigue Impact Scale, and the Timed Up and Go. Participants demonstrated improvement or maintenance of abilities in all measures with no adverse events. Discussion: This clinical report describes the integration of the evidence, clinical expertise, and patient values to develop and implement individualized, community-based exercise groups, aimed to improve balance, gait speed, and fatigue measures for persons with HD and those at-risk. Post-program reflections and recommendations for those who are interested in developing similar programs in other communities are described.

KEYWORDS:

• Community based
• exercise
• Huntington’s disease

Acknowledgments

We express our gratitude to our participants and their caregivers, who made this exercise group an unforgettable experience. We thank Norton Healthcare for providing space and exercise equipment, as well as Dr. Angela Hardwick and Cathy Saliga for assistance with recruitment.

Declaration of interest

The authors report no conflicts of interest.