The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe

Publikation: Beitrag in FachzeitschriftArtikelForschungPeer-Review

Autoren

  • Luz María Peña-Longobardo
  • Isaac Aranda-Reneo
  • Juan Oliva-Moreno
  • Svenja Litzkendorf
  • Isabelle Durand-Zaleski
  • Eduardo Tizzano
  • Julio López-Bastida

Externe Organisationen

  • Universidad de Castilla-La Mancha
  • Institut national de la santé et de la recherche médicale (INSERM)
  • Universidad Autónoma de Barcelona (UAB)
Forschungs-netzwerk anzeigen

Details

OriginalspracheEnglisch
Aufsatznummer5640
Seiten (von - bis)1-12
Seitenumfang12
FachzeitschriftInternational Journal of Environmental Research and Public Health
Jahrgang17
Ausgabenummer16
PublikationsstatusVeröffentlicht - 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.

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The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe. / Peña-Longobardo, Luz María; Aranda-Reneo, Isaac; Oliva-Moreno, Juan et al.
in: International Journal of Environmental Research and Public Health, Jahrgang 17, Nr. 16, 5640, 05.08.2020, S. 1-12.

Publikation: Beitrag in FachzeitschriftArtikelForschungPeer-Review

Peña-Longobardo, LM, Aranda-Reneo, I, Oliva-Moreno, J, Litzkendorf, S, Durand-Zaleski, I, Tizzano, E & López-Bastida, J 2020, 'The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe', International Journal of Environmental Research and Public Health, Jg. 17, Nr. 16, 5640, S. 1-12. https://doi.org/10.3390/ijerph17165640
Peña-Longobardo, L. M., Aranda-Reneo, I., Oliva-Moreno, J., Litzkendorf, S., Durand-Zaleski, I., Tizzano, E., & López-Bastida, J. (2020). The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe. International Journal of Environmental Research and Public Health, 17(16), 1-12. Artikel 5640. https://doi.org/10.3390/ijerph17165640
Peña-Longobardo LM, Aranda-Reneo I, Oliva-Moreno J, Litzkendorf S, Durand-Zaleski I, Tizzano E et al. The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe. International Journal of Environmental Research and Public Health. 2020 Aug 5;17(16):1-12. 5640. doi: 10.3390/ijerph17165640
Peña-Longobardo, Luz María ; Aranda-Reneo, Isaac ; Oliva-Moreno, Juan et al. / The economic impact and health-related quality of life of spinal muscular atrophy : An analysis across europe. in: International Journal of Environmental Research and Public Health. 2020 ; Jahrgang 17, Nr. 16. S. 1-12.
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title = "The economic impact and health-related quality of life of spinal muscular atrophy: An analysis across europe",
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.",
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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 -