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

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

Health-related quality of life and unmet healthcare needs in Huntington’s disease

“…Furthermore, the most wide-ranged health profile was found for these patients. Patients in this phase represent a largely heterogenic group, due to higher variation in symptom presentation and disease progression [20]. The phase can be considered a transitional phase, where patients transition from being relatively independent to becoming increasingly dependent in various areas of daily life; thus resulting in these patients experiencing considerable difficulties.…”

“…Evidence on health care utilization, patients’ needs for health care services and HRQoL in the HD population is sparse [20]. In a qualitative study of healthcare experiences of families affected by HD from Canada, complex needs for healthcare services and emotional support were found.…”

“…At the individual level the NPCS can be used to monitor the changing needs and provisions of patients along the care pathway over time. The scale has shown good psychometric qualities and has been translated to Norwegian [20, 24]. …”

“…All variables, with exception of housing situation due to the high correlation with TFC score, were entered into the regression analyses as control variables. Additionally, despite lacking significance in simple regression, comorbidity and education as these were shown to be associated with levels of unmet needs [20], and age known to influence HRQoL in the normal population, were entered in regression analyses as control variables. Multiple regression analyses were performed using a hierarchical approach (a block-wise analysis).…”

“…Despite general knowledge of the need for multidisciplinary and comprehensive healthcare for patients with HD, there is a lack of research investigating the relationship between healthcare service delivery (or lack thereof) and HRQoL. One previous study has shown that HD patients have a considerable level of unmet needs for healthcare and social support, indicating that many patients do not receive the comprehensive care they need [20]. To the authors’ knowledge, only one study that included patients with rare long-term neurological conditions, including HD, has investigated both HRQoL and healthcare services, more specifically access to supportive health and social care.…”