Social/economic costs and health-related quality of life in patients with histiocytosis in Europe

verfasst von

BURQOL-RD Research Network , Georgi Iskrov, Itziar Astigarraga, Rumen Stefanov, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Arrigo Schieppati, Domenica Taruscio, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore

Abstract

Objective: The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with histiocytosis in Europe. Methods: We conducted a cross-sectional study of patients with histiocytosis from France, Germany, Italy, Spain, Bulgaria, the UK, and Sweden. Data on demographic characteristics, health resource utilisation, informal care, loss of labour productivity and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. Results: A total of 134 patients (35 France, 32 Germany, 30 Italy, 24 Spain, 7 Bulgaria, 4 UK and 2 Sweden) completed the questionnaire. The average annual costs ranged from € 6832 to € 33,283 between countries, the year of reference being 2012. Estimated direct healthcare costs ranged from € 1698 to € 18,213; direct nonhealthcare costs ranged from € 2936 to € 17,622 and labour productivity losses ranged from € 1 to € 8855. The mean EQ-5D score for adult histiocytosis patients was estimated at between 0.32 and 0.85, and the mean EQ-5D visual analogue scale score was estimated at between 50.00 and 66.50. Conclusion: The main strengths of this study lie in our bottom-up approach to costing and in the evaluation of histiocytosis patients from a broad perspective (societal costs). This type of analysis is very scarce in international literature for rare diseases in comparison with other illnesses. We conclude that histiocytosis patients incur considerable societal costs and experience substantial deterioration in HRQOL.

Organisationseinheit(en)

Center for Health Economics Research Hannover (CHERH)

Externe Organisation(en)

Institute for rare diseases (IRD)
Medical University of Plovdiv
Hospital Universitario de Cruces
Universidad de Castilla-La Mancha
Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Fundación Canaria de Investigación Sanitaria (FUNCANIS)
Servicio canario de la Salud
Instituto de Salud Carlos III (ISCIII)
Istituto di Ricerche Farmacologiche Mario Negri
Istituto Superiore di Sanita
Corvinus University of Budapest
London School of Economics and Political Science
Hopital Hotel-Dieu AP-HP
Institut national de la santé et de la recherche médicale (INSERM)
The Swedish Institute for Health Economics (IHE)
Università Commerciale Luigi Bocconi
Universite Paris 7

Typ

Artikel

Journal

European Journal of Health Economics

Band

17

Seiten

67-78

Anzahl der Seiten

12

ISSN

1618-7598

Publikationsdatum

04.2016

Publikationsstatus

Veröffentlicht

Peer-reviewed

Ja

ASJC Scopus Sachgebiete

Volkswirtschaftslehre, Ökonometrie und Finanzen (sonstige), Health policy

Ziele für nachhaltige Entwicklung

SDG 3 – Gute Gesundheit und Wohlergehen

Elektronische Version(en)

https://doi.org/10.1007/s10198-016-0790-5 (Zugang: Geschlossen)