title: Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study.
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.
authors.affiliation: 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. r.m.v.walsem@medisin.uio.no.|Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
authors.forename: Marleen R
authors.initials: MR
authors.lastname: van Walsem
authors.affiliation: 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. emihow@ous-hf.no.|Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. emihow@ous-hf.no.
authors.forename: Emilie I
authors.initials: EI
authors.lastname: Howe
authors.affiliation: Centre for Rare Disorders, Oslo University Hospital, Rikshospitalet, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. kiversen@ous-hf.no.
authors.forename: Kristin
authors.initials: K
authors.lastname: Iversen
authors.affiliation: Department of Health Management and Health Economics, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. jan.frich@medisin.uio.no.|Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. jan.frich@medisin.uio.no.
authors.forename: Jan C
authors.initials: JC
authors.lastname: Frich
authors.affiliation: 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. nadand@ous-hf.no.|Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. nadand@ous-hf.no.
authors.forename: Nada
authors.initials: N
authors.lastname: Andelic
mesh_terms: D000328:Adult; D003191:Comprehensive Health Care; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand; D054625:Healthcare Disparities / Q000706:statistics & numerical data*; D006801:Humans; D006816:Huntington Disease / Q000523:psychology* / Q000628:therapy*; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D012944:Social Support