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 -