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Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe

Overview of attention for article published in HEPAC Health Economics in Prevention and Care, April 2016
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Title
Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe
Published in
HEPAC Health Economics in Prevention and Care, April 2016
DOI 10.1007/s10198-016-0788-z
Pubmed ID
Authors

Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Manuel Posada-de-la-Paz, Pedro Serrano-Aguilar, Panos Kanavos, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Petra Baji, Claudia Delgado, Johann Matthias Graf von der Schulenburg, Ulf Persson, Karine Chevreul, Giovanni Fattore, The BURQOL-RD Research Network

Abstract

The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with Prader-Willi syndrome (PWS) in Europe. We conducted a cross-sectional study of patients with PWS from Spain, Bulgaria, Hungary, Germany, Italy, the UK, Sweden and France. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. A total of 261 patients completed the questionnaire. The average annual costs ranged from € 3937 to € 67,484 between countries; the reference year for unit prices was 2012. Direct healthcare costs ranged from € 311 to € 18,760, direct non-healthcare costs ranged from € 1269 to € 44,035, and loss of labour productivity ranged from € 0 to € 2255. Costs were also shown to differ between children and adults. The mean EQ-5D index score for adult PWS patients ranged between 0.40 and 0.81 and the mean EQ-5D visual analogue scale score ranged between 51.25 and 90.00. The main strengths of this study lie in our bottom-up approach to costing and in the evaluation of PWS patients from a broad societal perspective. This type of analysis is very scarce in the international literature on rare diseases in comparison with other illnesses. We conclude that PWS patients incur considerable societal costs and experience substantial deterioration in HRQOL.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 130 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 130 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 21 16%
Student > Master 17 13%
Student > Bachelor 15 12%
Student > Ph. D. Student 13 10%
Other 8 6%
Other 20 15%
Unknown 36 28%
Readers by discipline Count As %
Medicine and Dentistry 27 21%
Nursing and Health Professions 15 12%
Economics, Econometrics and Finance 11 8%
Psychology 11 8%
Pharmacology, Toxicology and Pharmaceutical Science 5 4%
Other 19 15%
Unknown 42 32%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 04 April 2016.
All research outputs
#17,285,668
of 25,373,627 outputs
Outputs from HEPAC Health Economics in Prevention and Care
#919
of 1,303 outputs
Outputs of similar age
#193,358
of 314,992 outputs
Outputs of similar age from HEPAC Health Economics in Prevention and Care
#23
of 35 outputs
Altmetric has tracked 25,373,627 research outputs across all sources so far. This one is in the 21st percentile – i.e., 21% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,303 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.7. This one is in the 22nd percentile – i.e., 22% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 314,992 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 30th percentile – i.e., 30% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 35 others from the same source and published within six weeks on either side of this one. This one is in the 28th percentile – i.e., 28% of its contemporaries scored the same or lower than it.