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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 The European Journal of Health Economics, April 2016
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2 tweeters

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53 Mendeley
Title
Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe
Published in
The European Journal of Health Economics, 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

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.

Twitter Demographics

The data shown below were collected from the profiles of 2 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 53 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 53 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 11 21%
Student > Bachelor 8 15%
Unspecified 8 15%
Researcher 8 15%
Other 4 8%
Other 14 26%
Readers by discipline Count As %
Unspecified 11 21%
Medicine and Dentistry 9 17%
Economics, Econometrics and Finance 9 17%
Nursing and Health Professions 7 13%
Psychology 5 9%
Other 12 23%

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
#7,833,642
of 12,484,531 outputs
Outputs from The European Journal of Health Economics
#487
of 742 outputs
Outputs of similar age
#145,673
of 266,776 outputs
Outputs of similar age from The European Journal of Health Economics
#40
of 48 outputs
Altmetric has tracked 12,484,531 research outputs across all sources so far. This one is in the 23rd percentile – i.e., 23% of other outputs scored the same or lower than it.
So far Altmetric has tracked 742 research outputs from this source. They receive a mean Attention Score of 4.5. This one is in the 25th percentile – i.e., 25% 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 266,776 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 35th percentile – i.e., 35% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 48 others from the same source and published within six weeks on either side of this one. This one is in the 10th percentile – i.e., 10% of its contemporaries scored the same or lower than it.