Abstract
Background Research suggests that multidisciplinary rehabilitation is associated with improvement in physical functioning in HD. Aims To assess the effects of an intensive, multidisciplinary rehabilitation program for patients with early to mid-stage Huntington’s disease (HD), and to explore participants’ experiences with the programme. Methods/techniques A one year group-based multidisciplinary rehabilitation program for individuals with early to mid-stage HD was established, consisting of three in house stays of three weeks in a rehabilitation institution. Participants were members of groups of four to six, and the program involved intensive physical training, information and support related to speech, nutrition, activities of daily living and cognitive function. Participants were individually assessed and a tailored rehabilitation plan was made for each participant. Results Out of 37 participants, 31 (83.8%) completed the program as planned. Assessments of participants 3 months after the final stay found improved balance, gait function, physical quality of life and reduced symptoms of depression and anxiety in participants compared with scores at baseline. In qualitative interviews the social benefits of group “comradery” was reported as an important motivation, in addition to experiencing measurable improvements and having a contact person assigned to each participant. Conclusions Intensive multidisciplinary rehabilitation for individuals with early to mid-stage HD is feasible and associated with improved function and physical quality of life. An individually tailored plan, a contact person for each participant, a peer group approach and communication between institutions and primary health professionals could be mediators of clinical outcomes. Randomised controlled trials are needed to study effects of various interventions, as well as cost-benefit analysis of interventions. Future research should aim at studying effects of specific components in programs.
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