Abstract
BackgroundHuntington’s disease (HD) is a complex, single-gene inherited neurodegenerative condition resulting in symptoms that occur across a wide range of neurological domains, including cognitive, behavioral and motor. The benefits of regular physical activity for people with HD are widely recognized. However, a number of factors can prohibit sustained exercise and activity. The purpose of this trial is to explore the feasibility, acceptability and effectiveness of a physical activity intervention program targeted for people with early- to mid-stage HD.Methods/DesignThe proposed trial is a single blind, multisite, exploratory, randomized controlled feasibility trial of a physical activity intervention. A total of 62 participants with genetically confirmed HD will be recruited. Each participant will be involved in the trial for 26 weeks. Participants will be randomized immediately following the baseline assessment into either a physical activity intervention or a social contact control intervention. The physical activity intervention is framed around self-determination theory placed within a broader behaviour change wheel framework. An HD-specific workbook and individual goal setting will be utilized over six 1:1 sessions, with interim telephone calls. All participants will be reassessed at 16 weeks following the baseline assessment, and then again at a final follow-up assessment 26 weeks later. At the end of the study, all participants will be offered a brief version of the alternative intervention, with one home visit and one follow-up telephone call.DiscussionEngaging and supporting people with HD in a regular physical activity program raises a number of challenges. The physical activity intervention and the comparator social interaction intervention have been developed following consultation with people with HD and their families. Each are individually tailored and determined on individual needs and goals. The results from this trial will provide guidance for the development of definitive trials.Trial registrationThe trial was registered with ISRCTN ( http://www.isrctn.com/ISRCTN65378754) on 13 March 2014.
Highlights
Huntington’s disease (HD) is a complex, single-gene inherited neurodegenerative condition resulting in symptoms that occur across a wide range of neurological domains, including cognitive, behavioral and motor
Engaging and supporting people with HD in a regular physical activity program raises a number of challenges
Provision of appropriate support and strategies that are modified to the specific nature of the disease are crucial, as people with HD may struggle to participate in regular conventional physical activity or exercise programs [14]
Summary
Huntington’s disease (HD) is a complex, single-gene inherited neurodegenerative condition resulting in symptoms that occur across a wide range of neurological domains, including cognitive, behavioral and motor. Research has shown a number of factors which impact on physical activity participation, including fluctuations in physical health, transportation issues, other time conflicts, social stigma, external demands and lack of motivation [11,12,13]. These issues are often further compounded by disease-specific barriers in the presence of neurodegenerative disease such as HD. In the case of HD, challenges are specific to the triad of motor, cognitive and behavioral symptoms that are notably complicated by apathy alongside difficulties in planning and executive function
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
