Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study

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Abstract

Background

In 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.

Methods

Eighty-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.

Results

A 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).

Conclusions

Needs 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.

Electronic supplementary material

The online version of this article (doi:10.1186/s13023-015-0324-8) contains supplementary material, which is available to authorized users.

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Most cited references 30

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Understanding differences in health behaviors by education.

David Cutler, Adriana Lleras-Muney (2010)

Using a variety of data sets from two countries, we examine possible explanations for the relationship between education and health behaviors, known as the education gradient. We show that income, health insurance, and family background can account for about 30 percent of the gradient. Knowledge and measures of cognitive ability explain an additional 30 percent. Social networks account for another 10 percent. Our proxies for discounting, risk aversion, or the value of future do not account for any of the education gradient, and neither do personality factors such as a sense of control of oneself or over one's life. Copyright 2009 Elsevier B.V. All rights reserved.

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Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Matilda Anderson, Elizabeth J Elliott, Yvonne A Zurynski (2013)

Background Families of children living with a rare disease report significant health and social burden, however, few studies have systematically examined family needs by using validated tools to assess the scope and extent of this burden. Our aim was to develop a comprehensive survey to assess health, psychosocial and financial impacts on Australian families caring for a child with a rare disease. Methods We developed a self-administered survey for parents/carers incorporating pre-validated tools. The survey included questions about experiences of diagnosis, health services use and needs, needs for peer and financial supports. Forty-seven families attending the state-wide Genetic Metabolic Disorders Service at the Children’s Hospital at Westmead, Sydney were invited to participate. Results Of 46 families who received the survey, 30 (65%) completed it. Most (93%) found the survey acceptable and relevant (91%). Patients were 1–17 years old, 14 (47%) male, and 12 (40%) non-Caucasian. Eighteen (60%) had a lysosomal storage disease and 12(40%) had a mitochondrial disorder. Eleven (38%) saw 3–5 doctors and four (14%) saw 6–10 doctors before receiving the correct diagnosis; 43% felt diagnosis was delayed. Four (13%) were dissatisfied with the way diagnosis was given, due to insensitive style of communication, inadequate information and psychological support. Psychosocial impact was moderate to high for 90% of families and the level of impact was not dependent on the level of health functioning of the child. Twenty-six (87%) wanted, but only 13(43%) received, information about peer-support groups. The 30 children accounted for 168 visits to general practitioners and 260 visits to specialist doctors; 21 (70%) children had at least one admission to hospital, including one who had 16 admissions in the previous 12 months. Most families (77%) received financial assistance but 52% believed this was insufficient. Families benefited from a specialised multi-disciplinary clinic but called for patient-held electronic medical records. Conclusions Australian families caring for children with genetic metabolic disorders are adversely impacted by delays in diagnosis, lack of easy access to peer support groups and lack of psychological support. Further research is needed to estimate economic impact and to analyse health service delivery models for children with rare diseases in Australia.

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Psychiatric symptoms in Huntington's disease before diagnosis: the predict-HD study.

Kevin Duff, Jane Paulsen, Leigh J. Beglinger … (2007)

Psychiatric disturbances are relatively common in manifest Huntington's disease (HD), but less is known about these symptoms in the earliest phase of the illness. This study examined self-reported psychiatric symptoms in a large sample (N = 681) of prediagnosed individuals who show the gene expansion for HD ("expansion-positive") compared with a sample of individuals who do not show the gene expansion but are at risk for HD ("expansion-negative"). Using baseline Symptom Checklist 90-Revised (SCL-90-R) data from the Predict-HD study, expansion-positive individuals reported significantly more psychiatric symptoms (e.g., depression, anxiety, obsessive-compulsiveness) than expansion-negative individuals. Within the expansion-positive group, individuals with more motor signs had higher levels of psychiatric symptoms. The SCL-90-R scores had stronger relationships with reported abilities to perform activities of daily living than other markers of HD. Finally, when companions of the expansion-positive individuals also completed the SCL-90-R on the participants, there was considerable consistency in the ratings of psychiatric symptoms. Subtle, subclinical psychiatric symptoms are present in this prediagnosed HD sample, even though most are estimated to be more than 10 years from HD diagnosis. As suggested by other research, these subtle symptoms might be the earliest markers of the disease; however, longitudinal data are needed.

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Author and article information

Contributors

Marleen R. van Walsem: r.m.v.walsem@medisin.uio.no

Emilie I. Howe: emihow@ous-hf.no

Kristin Iversen: kiversen@ous-hf.no

Jan C. Frich: jan.frich@medisin.uio.no

Nada Andelic: nadand@ous-hf.no

Journal

Journal ID (nlm-ta): Orphanet J Rare Dis

Journal ID (iso-abbrev): Orphanet J Rare Dis

Title: Orphanet Journal of Rare Diseases

Publisher: BioMed Central (London )

ISSN (Electronic): 1750-1172

Publication date (Electronic): 28 September 2015

Publication date PMC-release: 28 September 2015

Publication date Collection: 2015

Volume: 10

Electronic Location Identifier: 124

Affiliations

[ ]Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318 Oslo Norway

[ ]Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424 Oslo Norway

[ ]Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424 Oslo Norway

[ ]Centre for Rare Disorders, Oslo University Hospital, Rikshospitalet, P.O. Box 4950, Nydalen, 0424 Oslo Norway

[ ]Department of Health Management and Health Economics, University of Oslo, P.O. Box 1130, Blindern, 0318 Oslo Norway

[ ]Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424 Oslo Norway

Article

Publisher ID: 324

DOI: 10.1186/s13023-015-0324-8

PMC ID: 4585992

SO-VID: 2c610da5-752f-43be-b019-70f007c7f7c6

License:

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 27 May 2015

Date accepted : 18 August 2015

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ScienceOpen disciplines: Infectious disease & Microbiology

Keywords: huntington’s disease,healthcare services,social support services,healthcare needs

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ScienceOpen disciplines: Infectious disease & Microbiology

Keywords: huntington’s disease, healthcare services, social support services, healthcare needs

Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study

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Most cited references 30

Understanding differences in health behaviors by education.

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Psychiatric symptoms in Huntington's disease before diagnosis: the predict-HD study.

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