The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe

Autor: Eduardo F Tizzano, Svenja Litzkendorf, Juan Oliva-Moreno, Isaac Aranda-Reneo, Isabelle Durand-Zaleski, Luz María Peña-Longobardo, Julio López-Bastida
Přispěvatelé: Universidad de Castilla-La Mancha = University of Castilla-La Mancha (UCLM), Leibniz Universität Hannover=Leibniz University Hannover, Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Vall d'Hebron University Hospital [Barcelona], Biogen, Lallemant, Christopher, Universidad de Castilla-La Mancha (UCLM), Leibniz University Hannover, Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Paris (UP)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE)
Jazyk: angličtina
Rok vydání: 2020
Předmět:
Gerontology
Total cost
Health Status
Health
Toxicology and Mutagenesis
Health-related quality of life
health care survey
Dewey Decimal Classification::600 | Technik::620 | Ingenieurwissenschaften und Maschinenbau
lcsh:Medicine
Social Welfare
Disease
Economic burden
0302 clinical medicine
Cost of Illness
cost analysis
Sickness Impact Profile
Surveys and Questionnaires
Germany
Health care
Medicine
Barthel index
030212 general & internal medicine
Economic impact analysis
Child
health care economics and organizations
spinal muscular atrophy
[SDV.EE]Life Sciences [q-bio]/Ecology
environment
030503 health policy & services
adult
public health
1. No poverty
health care cost
Health Care Costs
SMA
health care
Informal care
3. Good health
informal care
socioeconomic impact
health-related quality of life
Europe
[SDV.EE] Life Sciences [q-bio]/Ecology
environment
female
Caregivers
health care policy
social aspect
economic burden
France
Sick Leave
ddc:620
0305 other medical science
economic impact
Article
Muscular Atrophy
Spinal
03 medical and health sciences
Quality of life (healthcare)
ddc:690
male
health care utilization
Humans
cross-sectional study
ddc:610
Socioeconomic status
caregiver burden
European Quality of Life 5 Dimensions questionnaire
business.industry
social work
lcsh:R
Public Health
Environmental and Occupational Health
Cost-of-illness
economic aspect
major clinical study
United Kingdom
Cross-Sectional Studies
cost-of-illness
quality of life
adolescent
Dewey Decimal Classification::600 | Technik::690 | Hausbau
Bauhandwerk
social impact
Dewey Decimal Classification::600 | Technik::610 | Medizin
Gesundheit
business
Zdroj: International Journal of Environmental Research and Public Health
International Journal of Environmental Research and Public Health, 2020, 17 (16), ⟨10.3390/ijerph17165640⟩
International Journal of Environmental Research and Public Health, MDPI, 2020, 17 (16), ⟨10.3390/ijerph17165640⟩
Volume 17
Issue 16
International Journal of Environmental Research and Public Health 17 (2020), Nr. 16
International Journal of Environmental Research and Public Health, Vol 17, Iss 5640, p 5640 (2020)
ISSN: 1661-7827
1660-4601
Popis: Background: this study aimed to estimate the economic impact and health-related quality of life (HRQOL) of patients with spinal muscular atrophy (SMA) in three European countries. It was used a cross-sectional study carried out in France, Germany, and the United Kingdom. Data were collected from July 2015 to November 2015. Healthcare costs (hospitalizations, emergencies, medical tests, drugs used, visits to general practitioners (GPs) and specialists, medical material and healthcare transport), and non-healthcare costs (social services and informal care) were identified and valued. EuroQol instruments, the Zarit interview, and the Barthel Index were also used to reflect the burden and the social impact of the disease beyond the cost of healthcare. Results: we included 86 children with SMA, 26.7% of them had Type I, and 73.3% Type II or III. The annual average cost associated with SMA reaches &euro
54,295 in the UK, &euro
32,042 in France and &euro
51,983 in Germany. The direct non-healthcare costs ranged between 79&ndash
86% of the total cost and the informal care costs were the main component of these costs. Additionally, people suffering from this disease have a very low health-related quality of life, and there are large differences between countries. Conclusions: SMA has a high socioeconomic impact in terms of healthcare and social costs. It was also observed that the HRQOL of affected children was extremely reduced. The figures shown in this study may help to design more efficient and equitable policies, with special emphasis on the support provided to the families or on non-healthcare aid.
Databáze: OpenAIRE
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