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Social/economic cos...
Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe
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- Péntek, Márta (författare)
- Corvinus University of Budapest
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- Gulácsi, László (författare)
- Corvinus University of Budapest
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- Brodszky, Valentin (författare)
- Corvinus University of Budapest
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visa fler...
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- Baji, Petra (författare)
- Corvinus University of Budapest
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- Boncz, Imre (författare)
- University of Pécs
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- Pogány, Gábor (författare)
- Hungarian Federation of People with Rare and Congenital Diseases (RIROSZ)
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- López-Bastida, Julio (författare)
- Health Services Research on Chronic Patients Network (REDISSEC)
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- Linertová, Renata (författare)
- Fundación Canaria de Investigación Sanitaria (FUNCANIS)
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- Oliva-Moreno, Juan (författare)
- University of Castilla La Mancha
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- Serrano-Aguilar, Pedro (författare)
- Evaluation and Planning Service at Canary Islands Health Service (SESCS)
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- Posada-de-la-Paz, Manuel (författare)
- Carlos III Health Institute
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- Taruscio, Domenica (författare)
- Italian National Institute of Health (ISS)
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- Iskrov, Georgi (författare)
- Medical University of Plovdiv
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- Schieppati, Arrigo (författare)
- Mario Negri Institute for Pharmacological Research
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- von der Schulenburg, Johann Matthias Graf (författare)
- Leibniz University of Hannover
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- Kanavos, Panos (författare)
- London School of Economics and Political Science
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- Chevreul, Karine (författare)
- National Institute for Health and Medical Research, France
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- Persson, Ulf (författare)
- Lund University,Lunds universitet,Hälsoekonomi,Forskargrupper vid Lunds universitet,Health Economics,Lund University Research Groups
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- Fattore, Giovanni (författare)
- Bocconi University
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(creator_code:org_t)
- 2016-04-09
- 2016
- Engelska 10 s.
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Ingår i: European Journal of Health Economics. - : Springer Science and Business Media LLC. - 1618-7598 .- 1618-7601. ; 17, s. 89-98
- Relaterad länk:
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http://dx.doi.org/10...
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https://lup.lub.lu.s...
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- Objectives: To assess the health-related quality of life (HRQOL) of patients with mucopolysaccharidosis (MPS) and their caregivers and to quantify the disease-related costs from a societal perspective. Methods: In the context of a multi-country study of rare diseases (BURQOL-RD project), a cross-sectional survey was performed among MPS patients in seven European countries. Data on demographic characteristics, health resource utilization, informal care, and loss of labor productivity were collected. The EQ-5D, Barthel index (BI), and Zarit burden interview (ZBI) questionnaires were used to assess patients’ and their informal caregivers’ quality of life, patients’ functional ability, and caregivers’ burden, respectively. Results: Altogether, 120 patients (children 62 %, females 40 %) and 66 caregivers completed the questionnaire. Patients’ mean age was 16.5 years and median age at diagnosis was 3 years. Adult patients’ average EQ-5D and EQ VAS scores varied across countries from 0.13 to 0.43 and 30.0 to 62.2, respectively, mean BI was 46.7, and ZBI was 32.7. Mean informal care time was 51.3 h/week. The mean total annual cost per patient (reference year 2012) was €24,520 in Hungary, €25,993 in France, €84,921 in Italy, €94,384 in Spain, and €209,420 in Germany. Costs are also shown to differ between children and adults. Direct costs accounted for most of the costs in all five countries (80, 100, 99, 98, and 93 %, respectively). Conclusions: MPS patients experience substantial loss of HRQOL and their families take a remarkable part in their care. Although utilization of health and social care resources varies significantly across countries, MPS incurs considerable societal costs in all the countries studied.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)
Nyckelord
- Caregiver
- Cost-of-illness
- EQ-5D
- Health-related quality of life
- Mucopolysaccharidosis
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Péntek, Márta
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Gulácsi, László
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Brodszky, Valent ...
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Baji, Petra
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Boncz, Imre
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Pogány, Gábor
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visa fler...
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López-Bastida, J ...
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Linertová, Renat ...
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Oliva-Moreno, Ju ...
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Serrano-Aguilar, ...
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Posada-de-la-Paz ...
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Taruscio, Domeni ...
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Iskrov, Georgi
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Schieppati, Arri ...
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von der Schulenb ...
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Kanavos, Panos
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Chevreul, Karine
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Persson, Ulf
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Fattore, Giovann ...
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