Rehabilitation services for adult persons (completed)
Evaluation of specialized rehabilitation services for adult persons with functional decline.
About the project
The project includes a phD project "Improving healthcare service delivery in patients with Huntington’s disease", a national survey on rehabilitation services for adults, and the development of national projects through national and international collaborations. The project is designed to increase our understanding of the needs of the patients and their relatives, as well as the quality of the health services they receive.
Background & Objectives
There has been insufficient research and resources in the area of rehabilitation services for adult persons with complex functional disabilities even though the need for research-based knowledge is evident. The objectives of this project are to develop new knowledge, and to boost research capability and collaboration in the field.
The Huntington Disease (HD) study: A survey on the use of health services by patients with HD, and the needs of patients and health workers will be carried out through the phD project. Later in the project, an intervention that aims to help health personnel manage the behavioral problems associated with patients with advanced HD will be evaluated. Marleen van Walsem was the phD student working on this Project, with Dr. Nada Andelic and Professor Jan Frich from the Oslo University Hospital being the supervisors. Her thesis can be viewed in the "Results" section of this page.
The national survey can provide information on the health services currently available and the collected data will be used to identify future research needs as well as develop more efficient rehabilitation services. The survey can also be used to identify disparities between the regions and between different user groups. This sub-project is based at the Department of Adult Rehabilitation, Oslo Univ. Hospital, but is carried out in collaboration with various adult habilitation services in Norway. A project group, lead by Psychologist Nils-Øivind Offernes, has been established. Data collection has been completed, and the response rate from service providers and health personnel was satisfactory. A report will be released in 2016 when the data analysis is completed. In addition, an analysis of the structure and content of habilitation services has been initiated.
Mental disabilities: A multi-disciplinary team of researchers with different backgrounds from various regions of Norway has been established. This group will carry out a survey on the health conditions and life situations of patients and identify possible confounding factors. In addition, the types of health services provided, and to what extend the Health services meet the patients' needs will be examined. The project is based at the University Hospital of North Norway and lead by Professor Audny Anke.
Research Council of Norway (RCN) through CHARM (Research Centre for Habilitation and Rehabilitation Models and services). The Norwegian Health Directorate has funded the national survey, and the project will apply for funding from RCN for the pilot project on persons with mental disabilities.
- HD Project: Oslo University Hospitals
- National survey: All habilitation services for adults in Norway, Oslo University Hospitals, University Hospital of North Norway and Sunnaas Hospital.
- Mental disabilities project: Representatives from the universities in Oslo, Bergen, Trondheim and Tromsø in Norway, and the universities in Cardiff and Bilbao
Cognitive Performance After a One-Year Multidisciplinary Intensive Rehabilitation Program for Huntington's Disease: An Observational Study. J Huntingtons Dis. 2018;7(4):379-389. doi: 10.3233/JHD-180294. Van Walsem MR, Piira A, Mikalsen G, Fossmo HL, Howe EI, Knutsen SF, Frich JC.
Uncovering health and social care needs among myotonic dystrophy patients: Utility of the Needs and Provisions Complexity Scale. Acta Neurol Scand. 2019 Jun;139(6):526-532. doi: 10.1111/ane.13086. Epub 2019 Mar 25. Holmøy AKT, Johannessen CH, Hope S, van Walsem MR, Aanonsen NO, Hassel B.
Therapeutic Use of Music, Dance, and Rhythmic Auditory Cueing for Patients with Huntington's Disease: A Systematic Review. J Huntingtons Dis. 2019 Aug 22. doi: 10.3233/JHD-190370. Schwartz AE, van Walsem MR, Brean A, Frich JC.
- Neuropsychiatric symptoms in a European Huntington's disease cohort (REGISTRY), J Neurol Neurosurg Psychiatry. 2014 May 14, van Duijn E, Craufurd D, Hubers AA, Giltay EJ, Bonelli R, Rickards H, Anderson KE, van Walsem MR, van der Mast RC, Orth M, Landwehrmeyer GB; the European Huntington's Disease Network Behavioural Phenotype Working Group.
- Effects of a Two-Year Intensive Multidisciplinary Rehabilitation Program for Patients with Huntington’s Disease: a Prospective Intervention Study, PLOS, Huntington Disease, November 25, 2014, Piira A, Van Walsem, M, Mikalsen G, Øie L, Frich J, Knutsen S.
- Unmet needs for healthcare and social support services in patients With Huntington’s disease: a cross-sectional population-based study, Ojrd (2015) 10:124, DOI 10.1186/s13023-015-0324-8, Van Walsem MR, Howe EI, Iversen K, Frich JC, Andelic N.
- Gaps between needs and provision of services in Huntington’s disease: a cross-sectional population study. J Neurology, Neurosurgery, and Psychiatry 2016; 87. Suppl. 1 s. A79-A79. Van Walsem MR, Howe EU, Frich MC, Andelic N.
- Healthcare needs of patients with Huntington's disease in the South-East Region of Norway. Journal of Neurology, Neurosurgery, and Psychiatry 2014 ;Volum 85. Suppl. 1 s. A85-A85, Van Walsem RM; Howe E; Frich JC; Andelic N.
- Utilisation of cognitive aids and quality of life in HD patients. Journal of Neurology, Neurosurgery, and Psychiatry 2014; Volum 85. Suppl. 1 s. A90-A90, Howe, Emilie; Van Walsem, Regina Marleen; Frich, Jan C; Andelic, Nada.
- Assistive Technology for Cognition and Health-related Quality of Life in Huntington's Disease. J Huntingtons Dis. 2016 Oct 1;5(3):261-270. Van Walsem MR, Howe EI, Frich JC, Andelic N.
- Doktorgradsavhandling: Unmet healthcare needs, healthrelated quality of life and assistive technology for cognition in Huntington’s disease. A population-based cross-sectional study. Van Walsem, RM.