The economic burden and health-related quality of life associated with systemic sclerosis in France

K. Chevreul, K. Berg Brigham, C. Gandré, L. Mouthon, Pedro Serrano-Aguilar, Renata Linertová., Julio López-Bastida, Juan Oliva-Moreno., Manuel Posada De La Paz, Manuel Hens Pérez, Ignacio Abaitua., Domenica Taruscio, Yllka Kodra., Arrigo Schieppati., Rumen Stefanov, Georgi Iskrov., László Gulácsi, Márta Péntek., Rosa Sánchez De Vega García, Claudia Delgado.Panos Kanavos, Aris Angelis, Elena Nicod., Johann Matthias Graf Von Der Schulenburg, Alexander Kuhlmann., Ulf Persson, Ola Ghatnekar., Karine Chevreul, Karen Brigham, Giovanni Fattore, Marianna Cavazza

Research output: Contribution to journalArticle

13 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)238-246
Number of pages9
JournalScandinavian Journal of Rheumatology
Issue number3
Publication statusPublished - May 1 2015


ASJC Scopus subject areas

  • Immunology and Allergy
  • Rheumatology
  • Immunology

Cite this

Chevreul, K., Brigham, K. B., Gandré, C., Mouthon, L., Serrano-Aguilar, P., Linertová., R., López-Bastida, J., Oliva-Moreno., J., De La Paz, M. P., Pérez, M. H., Abaitua., I., Taruscio, D., Kodra., Y., Schieppati., A., Stefanov, R., Iskrov., G., Gulácsi, L., Péntek., M., De Vega García, R. S., ... Cavazza, M. (2015). The economic burden and health-related quality of life associated with systemic sclerosis in France. Scandinavian Journal of Rheumatology, 44(3), 238-246.