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Patient’s experiences with the care for juvenile idiopathic arthritis across Europe

Overview of attention for article published in Pediatric Rheumatology, February 2018
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About this Attention Score

  • Above-average Attention Score compared to outputs of the same age (55th percentile)

Mentioned by

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3 tweeters

Citations

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9 Dimensions

Readers on

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86 Mendeley
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Title
Patient’s experiences with the care for juvenile idiopathic arthritis across Europe
Published in
Pediatric Rheumatology, February 2018
DOI 10.1186/s12969-018-0226-0
Pubmed ID
Authors

E. H. Pieter. van Dijkhuizen, Tsipi Egert, Yona Egert, Wendy Costello, Casper Schoemaker, Marlous Fernhout, Mirjam Kepic, Alberto Martini, Silvia Scala, Ingrid Rotstein-Grein, Sebastiaan J. Vastert, Nico M. Wulffraat

Abstract

To assess the views of juvenile idiopathic arthritis (JIA) patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe. In a collaboration between physicians and patient associations, a questionnaire was developed, covering various domains of JIA care, including demographics, diagnosis, referrals to various health care professionals, access to pain and fatigue management and support groups, information they received about the disease and awareness of and participation in research. The questionnaire was translated and distributed by parent associations and pediatric rheumatologists in 25 countries, 22 of which were European. After completion the replies were entered on the PRINTO website. Replies could either be entered directly by parents on the website or on paper. In these cases, the replies were scanned and emailed by local hospital staff to Utrecht where they were entered by I.R. in the database. The survey was completed by 622 parents in 23 countries. The majority (66.7%) of patients were female, with median age 10-11 years at the completion of the questionnaire. Frequencies of self-reported JIA categories corresponded to literature. Some patients had never been referred to the ophthalmologist (22.8%) or physiotherapist (31.7%). Low rates of referral or access to fatigue (3.5%) or pain management teams (10.0%), age appropriate disease education (11.3%), special rehabilitation (13.7%) and support groups (20.1%) were observed. Many patients indicated they did not have contact details for urgent advice (35.9%) and did not receive information about immunizations (43.2%), research (55.6%) existence of transition of care clinics (89,2%) or financial support (89.7%). While on immunosuppressive drugs, about one half of patients did not receive information about immunizations, travelling, possible infections or how to deal with chickenpox or shingles. Low rates of referral to health care professionals may be due to children whose illness is well managed and who do not need additional support or information. Improvements are needed, especially in the areas of supportive care and information patients receive. It is also important to improve doctor patient communication between visits. Physicians can be instrumental in the setting up of support groups and increasing patients' awareness of existing support. Suggestions are given to convey crucial pieces of information structurally and repeatedly to ensure, among other things, compliance.

Twitter Demographics

The data shown below were collected from the profiles of 3 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 86 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 86 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 17 20%
Student > Bachelor 8 9%
Other 7 8%
Student > Ph. D. Student 7 8%
Researcher 6 7%
Other 15 17%
Unknown 26 30%
Readers by discipline Count As %
Medicine and Dentistry 21 24%
Nursing and Health Professions 16 19%
Psychology 5 6%
Arts and Humanities 2 2%
Business, Management and Accounting 2 2%
Other 7 8%
Unknown 33 38%

Attention Score in Context

This research output has an Altmetric Attention Score of 2. 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 18 February 2018.
All research outputs
#6,788,770
of 12,526,930 outputs
Outputs from Pediatric Rheumatology
#149
of 353 outputs
Outputs of similar age
#148,157
of 346,144 outputs
Outputs of similar age from Pediatric Rheumatology
#1
of 1 outputs
Altmetric has tracked 12,526,930 research outputs across all sources so far. This one is in the 44th percentile – i.e., 44% of other outputs scored the same or lower than it.
So far Altmetric has tracked 353 research outputs from this source. They receive a mean Attention Score of 4.0. This one has gotten more attention than average, scoring higher than 56% of its peers.
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 346,144 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 55% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them