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

Georgi Iskrov (), Itziar Astigarraga, Rumen Stefanov, Julio López-Bastida, Renata Linertová, Juan Oliva (), Pedro Serrano-Aguilar, Manuel Posada- de-la-Paz, Arrigo Schieppati, Domenica Taruscio, Márta Péntek, Johann Matthias Graf Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson and Giovanni Fattore
Additional contact information
Georgi Iskrov: Institute for Rare Diseases
Itziar Astigarraga: Hospital Universitario Cruces
Rumen Stefanov: Institute for Rare Diseases
Julio López-Bastida: University of Castilla-La Mancha
Renata Linertová: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Pedro Serrano-Aguilar: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Manuel Posada- de-la-Paz: ISCIII, SpainRDR & CIBERER
Arrigo Schieppati: Istituto di Ricerche Farmacologiche Mario Negri
Domenica Taruscio: Istituto Superiore di Sanità (ISS)
Johann Matthias Graf Schulenburg: Leibniz Universität Hannover
Panos Kanavos: London School of Economics and Political Science
Karine Chevreul: AP-HP, Hôtel Dieu
Ulf Persson: The Swedish Institute for Health Economics
Giovanni Fattore: Bocconi University

The European Journal of Health Economics, 2016, vol. 17, issue 1, No 7, 67-78

Abstract: 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.

Keywords: Histiocytosis; Cost-of-illness; Social cost; Health-related quality of life; Europe (search for similar items in EconPapers)
Date: 2016
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Citations: View citations in EconPapers (14)

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DOI: 10.1007/s10198-016-0790-5

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