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

authored by

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.

Organisation(s)

Center for Health Economics Research Hannover (CHERH)

External Organisation(s)

Institute of Rare Diseases
Medical University of Plovdiv
Hospital Universitario de Cruces
Universidad de Castilla-La Mancha
Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Canary Islands Foundation for Health Research (FUNCANIS)
Canary Islands Health Service
Institute of Health Carlos III (ISCIII)
Institute of Pharmacological Research Mario Negri IRCCS
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
Università Commerciale Luigi Bocconi
Universite Paris 7

Type

Article

Journal

European Journal of Health Economics

Volume

17

Pages

67-78

No. of pages

12

ISSN

1618-7598

Publication date

04.2016

Publication status

Published

Peer reviewed

Yes

ASJC Scopus subject areas

Economics, Econometrics and Finance (miscellaneous), Health Policy

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1007/s10198-016-0790-5 (Access: Closed)