Unmet healthcare needs, healthrelated quality of life and assistive technology for cognition in Huntington’s disease. A population-based cross-sectional study
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AbstractPatients with Huntington’s disease (HD) need tailored multidisciplinary healthcare to maintain and optimize function and health-related quality of life (HRQoL). The aims of this thesis were to describe the levels and prevalence of unmet needs for healthcare and social support services in patients with HD, and to study factors associated with unmet healthcare needs, particularly the association with HRQoL. The thesis also investigates the use of assistive technology for cognition (ATC) and associations with HRQoL as a case of a supportive unmet healthcare need. Substantial unmet needs for healthcare and social support services for patients with HD were revealed. High levels of unmet needs were found at all five disease stages (I-V), but being in the middle phase of HD (disease stage III) increased the odds by 3.5 times. Higher levels of unmet needs were associated with lower HRQoL. ATC was used infrequently. An association between ATC use and HRQoL was not found, but ATC was significantly associated with functional ability. The thesis addresses an important gap in the scientific literature regarding healthcare service delivery to patients with Huntington’s disease.
List of papers
|I. van Walsem MR, Howe EI, Iversen K, Frich JC, Andelic N. Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional study. Orphanet Journal of Rare Diseases 2015; 10: 124. The article is available in DUO: http://urn.nb.no/URN:NBN:no-50367|
|II. van Walsem MR, Howe EI, Ruud GA, Frich JC, Andelic N. Health-related quality of life and unmet healthcare needs in Huntington’s disease. Health and Quality of Life Outcomes. In press. The published article is available in DUO: http://urn.nb.no/URN:NBN:no-56691|
|III. van Walsem MR, Howe EI, Frich JC, Andelic N. Assistive Technology for Cognition and Health-related Quality of Life in Huntington’s Disease. Journal of Huntington’s Disease 2016; 5(3): 261-270. The article is available in DUO: http://urn.nb.no/URN:NBN:no-56311|