Details
| Original language | English |
|---|---|
| Article number | 5640 |
| Pages (from-to) | 1-12 |
| Number of pages | 12 |
| Journal | International Journal of Environmental Research and Public Health |
| Volume | 17 |
| Issue number | 16 |
| Publication status | Published - 5 Aug 2020 |
Abstract
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 €54,295 in the UK, €32,042 in France and €51,983 in Germany. The direct non-healthcare costs ranged between 79–86% 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.
Keywords
- Cost-of-illness, Economic burden, Europe, Health-related quality of life, Informal care, Spinal muscular atrophy
ASJC Scopus subject areas
- Environmental Science(all)
- Pollution
- Medicine(all)
- Public Health, Environmental and Occupational Health
- Environmental Science(all)
- Health, Toxicology and Mutagenesis
Sustainable Development Goals
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In: International Journal of Environmental Research and Public Health, Vol. 17, No. 16, 5640, 05.08.2020, p. 1-12.
Research output: Contribution to journal › Article › Research › peer review
}
TY - JOUR
T1 - The economic impact and health-related quality of life of spinal muscular atrophy
T2 - An analysis across europe
AU - Peña-Longobardo, Luz María
AU - Aranda-Reneo, Isaac
AU - Oliva-Moreno, Juan
AU - Litzkendorf, Svenja
AU - Durand-Zaleski, Isabelle
AU - Tizzano, Eduardo
AU - López-Bastida, Julio
N1 - This analysis has been supported by BIOGEN.
PY - 2020/8/5
Y1 - 2020/8/5
N2 - 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 €54,295 in the UK, €32,042 in France and €51,983 in Germany. The direct non-healthcare costs ranged between 79–86% 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.
AB - 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 €54,295 in the UK, €32,042 in France and €51,983 in Germany. The direct non-healthcare costs ranged between 79–86% 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.
KW - Cost-of-illness
KW - Economic burden
KW - Europe
KW - Health-related quality of life
KW - Informal care
KW - Spinal muscular atrophy
UR - http://www.scopus.com/inward/record.url?scp=85089302321&partnerID=8YFLogxK
U2 - 10.3390/ijerph17165640
DO - 10.3390/ijerph17165640
M3 - Article
C2 - 32764338
AN - SCOPUS:85089302321
VL - 17
SP - 1
EP - 12
JO - International Journal of Environmental Research and Public Health
JF - International Journal of Environmental Research and Public Health
SN - 1661-7827
IS - 16
M1 - 5640
ER -