ArticleOrphanet journal of rare diseases2015
Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study.
Article in Orphanet journal of rare diseases, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- Features of Computer-Based Decision Aids: Systematic Review, Thematic Synthesis, and Meta-Analyses.Journal of medical Internet research · 2016Pooled it
- Revolutionizing Huntington's Disease Treatment: Breakthroughs in AAV-Mediated Gene Therapy.Cells · 2025Review
- Healthcare needs, care use and health status outcomes in adults with Bardet-Biedl syndrome: a cross-sectional study in Norway.BMJ open · 2025Observational
- Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.Health psychology and behavioral medicine · 2025Article
- Unmet rehabilitation needs in the first 6 months post-injury in a trauma centre population with moderate-to-severe traumatic injuries.Journal of rehabilitation medicine · 2024Article
- Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study.BMC primary care · 2024Article
- Validity of the Norwegian Version of the Needs and Provision Complexity Scale (NPCS) in Patients with Traumatic Brain Injury and Atraumatic Subarachnoid Hemorrhage.Journal of clinical medicine · 2024Article
- Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach.Frontiers in neurology · 2024Article
- What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper.Orphanet journal of rare diseases · 2023Article
- Health related quality of life, service utilization and costs for patients with Huntington's disease in Norway.BMC health services research · 2022Article
- Psychosocial Impact of Huntington's Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic.Journal of personalized medicine · 2022Article
- Health services utilization of Chinese patients with Huntington's disease: a cross-sectional study.BMC health services research · 2021Article
- An Australian Neuro-Palliative perspective on Huntington's disease: a case report.BMC palliative care · 2021Article
- Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach.Frontiers in neurology · 2021Article
- The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington's Disease.Journal of Huntington's disease · 2020Article
- Article
- Age at Death and Causes of Death in Patients with Huntington Disease in Norway in 1986-2015.Journal of Huntington's disease · 2018Article
- Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.BMC health services research · 2017Article
- Health-related quality of life and unmet healthcare needs in Huntington's disease.Health and quality of life outcomes · 2017Article
- The health and life path of rare disease patients: results of the 2015 French barometer.Patient related outcome measures · 2017Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn order to plan and improve provision of comprehensive care in Huntington's disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.
methodsEighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients' needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.
resultsA high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).
conclusionsNeeds for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.
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