This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Research
Luz María Peña Longobardo
Universidad de Castilla-La Mancha
Corresponding Author
ORCiD: https://orcid.org/0000-0001-7224-2189
License:
This work is licensed under a CC BY 4.0 License. Read Full License
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. For this purpose, it was 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 consumption, visits to GPs and specialists, health 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 healthcare cost.
Results we included 86 children with SMA, 26.7% of them Type I and 73.3% Type II or III. The annually average cost associated with SMA reaches at 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 determinant of these costs. Additionally, people suffering from this disease have a very low health related quality of life, showing large differences between countries.
Conclusions SMA represents a considerably high socioeconomic impact both in terms of healthcare and social costs. It was also observed exceptional reduced HRQOL of children affected. 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 non-healthcare aids.
Keywords
spinal muscular atrophy, health-related quality of life, economic burden, cost-of-illness, Europe, informal care
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This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Research
Luz María Peña Longobardo
Universidad de Castilla-La Mancha
Corresponding Author
ORCiD: https://orcid.org/0000-0001-7224-2189
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
History
CURRENT STATUS: Posted
Version 1
Posted 12 May, 2020
No community comments so far
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Health Economics and Outcomes Research
License:
This work is licensed under a CC BY 4.0 License. Read Full License
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. For this purpose, it was 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 consumption, visits to GPs and specialists, health 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 healthcare cost.
Results we included 86 children with SMA, 26.7% of them Type I and 73.3% Type II or III. The annually average cost associated with SMA reaches at 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 determinant of these costs. Additionally, people suffering from this disease have a very low health related quality of life, showing large differences between countries.
Conclusions SMA represents a considerably high socioeconomic impact both in terms of healthcare and social costs. It was also observed exceptional reduced HRQOL of children affected. 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 non-healthcare aids.
Figure 1
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