Background
A multidisciplinary, intensive, group-based residential rehabilitation program for individuals with early to mid-stage Huntington’s disease (HD) was established in 2010 at two rehabilitation centres in Norway. Patients were assessed and managed by a multidisciplinary team, and a total of 31 out of 37 participants completed the one-year program as planned. A group of 10 participants continued for an additional year. We evaluated effects through an observational study, and we did a qualitative study exploring experiences of patients, family members, and health professionals.
Objectives
- To assess the effects of an intensive, multidisciplinary rehabilitation program for patients with early to mid-stage Huntington's disease
- To explore patients', family caregivers', and health professionals' experiences with a group-based, residential rehabilitation program for individuals with early to mid-stage HD
Outcomes
The observational study found significant improvements were observed in gait function, balance, in physical quality of life, anxiety and depression, as well as in BMI. ADL-function remained stable with no significant decline. Only one cognitive measure (SDMT) showed significant decline, while no decline was observed for the remaining cognitive measures.
In the qualitative process evaluation of the program some participants reported difficulties with defining individual rehabilitation goals, but written individualised plans and schedules were appreciated by all participants. Participants highlighted being member of an "HD-group" as a valuable experience, though tensions and conflicts could occur in groups. Participants typically reported improved gait and balance, increased self-confidence, and social benefits as outcomes. The intensive schedule was acceptable for most participants, but adjustments had been made to allow participants more time to eat, shower and dress between sessions.
Success factors reported by health professionals were assigning every patient with a contact person, using clinical tests results to motivate patients, and supervising health professionals in patients' local municipalities.
Scientific publications
- Piira A, van Walsem M, Mikalsen G, Nilsen KH, Knutsen SF, Frich JC. Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. PLoS Currents Huntington Disease 2013; doi: 10.1371/currents.hd.9504af71e0d1f87830c25c394be47027.
- Frich JC, Røthing M, Berge AR. Participants', caregivers,' and professionals' experiences with a group-based rehabilitation program for Huntington's disease: a qualitative study. BMC Health Serv Res 2014; 14: 395.
- Piira A, van Walsem M, Mikalsen G, Øie L, Frich JC, Knutsen SF. Effects of a two-year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. PLoS Currents Huntington Disease 2014; doi:10.1371/currents.hd.2c56ceef7f9f8e239a59ecf2d94cddac.
- Fossmo HL, Piira A, Miller JU, Frich JC. Fysioterapi ved Huntingtons sykdom [in Norwegian]. Fysioterapeuten 2013; nr. 1: 20-4.
- Piira A, Frich JC. Studier av tverrfaglig rehabilitering ved Huntingtons sykdom [in Norwegian]. Fysioterapeuten 2015; nr. 9: 48.
Oral presentations
- Piira A, van Walsem M, Mikalsen G, Nilsen KH, Knudsen SF, Frich JC. Tverrfaglig intensiv rehabilitering ved Huntingtons sykdom [in Norwegian]. Nevrodagene, Oslo, Norge, 11.3. 2013.
- Frich JC. Environmental modifiers: Prospects for rehabilitation in Huntington's disease [Invited plenary presentation]. European Huntington's Disease Network (EHDN) 8th Plenary Meeting, Barcelona, Spain, 19.9. 2014. Link to PDF of the presentation.
- Frich JC. Multidisciplinary, group-based residential rehabilitation for individuals with early to mid-stage Huntington's disease. Enroll-HD Site Investigators Meeting, London, UK, 4.-5.6. 2015.
- Frich JC. Status for rehabiliteringsprosjekter ved Huntingtons sykdom. Nordisk konference om Huntingtons sykdom, Copenhagen, Denmark 19.11. 2015.
- Frich JC. Information om friskvårdprojekt i Norge. Riksförbundet Huntingtons Sjukdom. Lund, Sweden, 15.4. 2016.
Abstracts at international conferences:
- Frich JC. Environmental modifiers: Prospects for rehabilitation in Huntington's disease. J Neurol Neurosurg Psychiatry 2014; 85 (suppl 1): A2.
- Piira A, van Walsem M, Mikalsen G, Øie L, Frich JC, Knutsen SF. A multidisciplinary intensive rehabilitation program for patients with Huntington’s disease – results after 2-years follow-up. J Huntingtons Dis 2013; 2: 338.
- van Walsem M, Piira A, Mikalsen G, Nilsen KH, Knutsen SF, Frich JC. A multidisciplinary intensive rehabilitation program for patients with Huntington’s disease – effects on cognitive function. J Huntingtons Dis 2013; 2: 337-338.
- Piira A, van Walsem M, Mikalsen G, Nilsen KH, Knutsen SF, Frich JC. Q20 A multidisciplinary intensive rehabilitation programme for persons with Huntington's disease: results after 1 year. J Neurol Neurosurg Psychiatry 2012; 83 (suppl. 1): A61.
- Frich JC, Berge AR, Røthing M. Intensive rehabilitation for Huntington's disease: a qualitative study of participants' and health professionals' experiences. J Neurol Neurosurg Psychiatry 2012; 83 (suppl. 1): A61.
- Piira A, Nilsen TS, Knutsen SF, van Walsem M, Frich JC. A multidisciplinary intensive rehabilitation program for persons with Huntington's disease - preliminary results after 1 year. Clin Genet 2011; 80 (suppl. 1): 52.
- Piira A, Øie L, Knutsen SF, van Walsem M, Frich JC. A multidisciplinary intensive rehabilitation programme for individuals with Huntington's disease: preliminary results from the pilot project. J Neurol Neurosurg Psychiatry 2010; 81 (suppl. 1): A47.
Funding
- The Norwegian Directorate of Health
Cooperation
- North Norway Rehabilitation Center, Tromsø, Norway
- Vikersund Kurbad Rehabiltation Centre, Vikersund, Norway
- Centre for Rare Disorders, Oslo University Hospital
- Rehab-Nor, Norway
- Research Network on Integrated Health Care, Helse Fonna Local Health Authority, Norway
Project start and finish
1.1.2010-31.12.2015