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A questionnaire covering demographics, diagnosis, referrals, access to pain and fatigue management, and support groups was translated and distributed in 25 countries. Responses were entered on the PRINTO website, either directly online or by scanned paper submissions. 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Pediatric Rheumatology (2018) 16:10  \n[https://doi.org/10.1186/s12969-018-0226-0](https://doi.org/10.1186/s12969-018-0226-0)  \nRESEARCH ARTICLE Open Access   \nPatient’s experiences with the care for  juvenile idiopathic arthritis across Europe  \nE. H. Pieter. van Dijkhuizen 1, Tsipi Egert2, Yona Egert2, Wendy Costello3, Casper Schoemaker 1,4, Marlous Fernhout4, Mirjam Kepic5, Alberto Martini6, Silvia Scala6, Ingrid Rotstein-Grein 1,7, Sebastiaan J. Vastert 1 and Nico M. Wulffraat 1*  \nAbstract  \nBackground: 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.  \nMethods: 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](I.R. in)[ ](I.R. in)[the database.](the database.)  \nResults: 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.  \nConclusions: 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.  \nKeywords: Patient participation, Care, Pediatric rheumatology, Europe  \n* Correspondence: [N.Wulffraat@umcutrecht.nl](N.Wulffraat@umcutrecht.nl)  \n1Paediatric Rheumatology, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Room KC.03.063. 0, [P.O. box](P.O. box) 85090, 3508, AB, Utrecht, The Netherlands  \nFull list of author information is available at the end of the article  \n© The Author(s) . 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4 .0 International License ([http://creativecommons.org/licenses/by/4.0/](http://creativecommons.org/licenses/by/4.0/)), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commo","cbCaitQaEWjOwpEz","https://ap.wps.com/l/cbCaitQaEWjOwpEz","pdf",403736,"English","# Abstract\n## Background\n## Methods\n## Results\n## Conclusions\n# Background\n## Patient-reported outcomes and patient involvement\n## Need to identify improvement areas","[{\"question\":\"What was the study’s main objective for juvenile idiopathic arthritis care?\",\"answer\":\"To assess views of JIA patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe.\"},{\"question\":\"How were the questionnaire responses collected and entered?\",\"answer\":\"A questionnaire was developed with physicians and patient associations, translated, and distributed by parent associations and pediatric rheumatologists. Replies were entered on the PRINTO website either directly online by parents or via scanned and emailed paper responses handled by local hospital staff.\"},{\"question\":\"What key gaps did the study highlight in supportive care and information?\",\"answer\":\"Low referral or access to several services (including fatigue or pain management teams), and limited information for patients on topics such as immunizations, research, transition of care clinics, and financial support were reported. Communication improvements between visits were also emphasized.\"}]","Patient’s experiences with the care for juvenile idiopathic arthritis across Europe | PDF",1791057950]