Details
| Original language | English |
|---|---|
| Pages (from-to) | 238-246 |
| Number of pages | 9 |
| Journal | Scandinavian Journal of Rheumatology |
| Volume | 44 |
| Issue number | 3 |
| Early online date | 18 Dec 2014 |
| Publication status | Published - May 2015 |
Abstract
Objectives: To provide data on the economic burden and health-related quality of life (HRQoL) associated with systemic sclerosis (SSc) in France and to raise awareness of the repercussions of this disease for patients and caregivers and on the health and social care system. Method: A cross-sectional study was carried out on 147 patients recruited through the Association des Sclérodermiques de France (ASF), the French association for SSc patients. Data on the patients' use of resources were obtained retrospectively from an online questionnaire and costs were estimated by a bottom-up approach. The HRQoL patients and caregivers was assessed with the five-level EURQol-5 Dimension (EQ-5D-5L) health questionnaire. Results: The average annual cost of SSc was estimated at EUR 22 459 per patient. Direct healthcare costs amounted to EUR 8452, direct non-healthcare formal costs to EUR 1606, direct non-healthcare informal costs to EUR 1875, and indirect costs resulting from patients' absence from the labour market to EUR 10 526. The main contributors to SSc costs were hospitalizations and early retirement. Mean EQ-5D utility scores were 0.49 for patients and 0.66 for caregivers. Conclusions: Although SSc is a rare disease, its economic burden from a societal perspective is substantial and the consequences for HRQoL are significant for both patients and caregivers in France, underscoring the need to develop tailored policies targeted at improving patients' care and reducing the long-term impact of SSc.
ASJC Scopus subject areas
- Medicine(all)
- Immunology and Allergy
- Medicine(all)
- Rheumatology
- Immunology and Microbiology(all)
- Immunology
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In: Scandinavian Journal of Rheumatology, Vol. 44, No. 3, 05.2015, p. 238-246.
Research output: Contribution to journal › Article › Research › peer review
}
TY - JOUR
T1 - The economic burden and health-related quality of life associated with systemic sclerosis in France
AU - BURQOL-RD Research Network
AU - Chevreul, Karine
AU - Brigham, Karen
AU - Gandré, C.
AU - Mouthon, L.
AU - Serrano-Aguilar, Pedro
AU - Linertová., Renata
AU - López-Bastida, Julio
AU - Oliva-Moreno., Juan
AU - De La Paz, Manuel Posada
AU - Pérez, Manuel Hens
AU - Abaitua., Ignacio
AU - Taruscio, Domenica
AU - Kodra., Yllka
AU - Schieppati., Arrigo
AU - Stefanov, Rumen
AU - Iskrov., Georgi
AU - Gulácsi, László
AU - Péntek., Márta
AU - De Vega García, Rosa Sánchez
AU - Delgado., Claudia
AU - Kanavos, Panos
AU - Angelis, Aris
AU - Nicod., Elena
AU - Von Der Schulenburg, Johann Matthias Graf
AU - Kuhlmann., Alexander
AU - Persson, Ulf
AU - Ghatnekar., Ola
AU - Chevreul, Karine
AU - Brigham, Karen
AU - Fattore, Giovanni
AU - Cavazza, Marianna
N1 - Funding Information: This study was supported by the Social Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe Project, which has received funding from the European Union in the framework of the Health Programme (grant A101205). The Executive Agency of the European Union is not responsible for any use that may be made of the information contained here.
PY - 2015/5
Y1 - 2015/5
N2 - Objectives: To provide data on the economic burden and health-related quality of life (HRQoL) associated with systemic sclerosis (SSc) in France and to raise awareness of the repercussions of this disease for patients and caregivers and on the health and social care system. Method: A cross-sectional study was carried out on 147 patients recruited through the Association des Sclérodermiques de France (ASF), the French association for SSc patients. Data on the patients' use of resources were obtained retrospectively from an online questionnaire and costs were estimated by a bottom-up approach. The HRQoL patients and caregivers was assessed with the five-level EURQol-5 Dimension (EQ-5D-5L) health questionnaire. Results: The average annual cost of SSc was estimated at EUR 22 459 per patient. Direct healthcare costs amounted to EUR 8452, direct non-healthcare formal costs to EUR 1606, direct non-healthcare informal costs to EUR 1875, and indirect costs resulting from patients' absence from the labour market to EUR 10 526. The main contributors to SSc costs were hospitalizations and early retirement. Mean EQ-5D utility scores were 0.49 for patients and 0.66 for caregivers. Conclusions: Although SSc is a rare disease, its economic burden from a societal perspective is substantial and the consequences for HRQoL are significant for both patients and caregivers in France, underscoring the need to develop tailored policies targeted at improving patients' care and reducing the long-term impact of SSc.
AB - Objectives: To provide data on the economic burden and health-related quality of life (HRQoL) associated with systemic sclerosis (SSc) in France and to raise awareness of the repercussions of this disease for patients and caregivers and on the health and social care system. Method: A cross-sectional study was carried out on 147 patients recruited through the Association des Sclérodermiques de France (ASF), the French association for SSc patients. Data on the patients' use of resources were obtained retrospectively from an online questionnaire and costs were estimated by a bottom-up approach. The HRQoL patients and caregivers was assessed with the five-level EURQol-5 Dimension (EQ-5D-5L) health questionnaire. Results: The average annual cost of SSc was estimated at EUR 22 459 per patient. Direct healthcare costs amounted to EUR 8452, direct non-healthcare formal costs to EUR 1606, direct non-healthcare informal costs to EUR 1875, and indirect costs resulting from patients' absence from the labour market to EUR 10 526. The main contributors to SSc costs were hospitalizations and early retirement. Mean EQ-5D utility scores were 0.49 for patients and 0.66 for caregivers. Conclusions: Although SSc is a rare disease, its economic burden from a societal perspective is substantial and the consequences for HRQoL are significant for both patients and caregivers in France, underscoring the need to develop tailored policies targeted at improving patients' care and reducing the long-term impact of SSc.
UR - http://www.scopus.com/inward/record.url?scp=84929310957&partnerID=8YFLogxK
U2 - 10.3109/03009742.2014.976653
DO - 10.3109/03009742.2014.976653
M3 - Article
C2 - 25521915
AN - SCOPUS:84929310957
VL - 44
SP - 238
EP - 246
JO - Scandinavian Journal of Rheumatology
JF - Scandinavian Journal of Rheumatology
SN - 0300-9742
IS - 3
ER -