BackgroundTo 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.MethodsIn 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.ResultsThe 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.ConclusionsLow 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.Electronic supplementary materialThe online version of this article (10.1186/s12969-018-0226-0) contains supplementary material, which is available to authorized users.

Objectives: To provide an overview of the paediatric rheumatology (PR) care in Europe to inform future specialist service provision. Methods: An online survey was developed and presented to national coordinating centres of the Pediatric Rheumatology International Trials Organisation (PRINTO) representing a single EU member state (35 centres; Country survey); and to 288 individual PR centres (Centre and Disease Surveys) as a part of the EU project SHARE. The survey contained country and centre specific components covering organisation of PR care, composition of teams, education, healthcare and research facilities, and assessment of needs. The national coordinating centres completed both centre as well as country questions. Results: Response rates were 83% for Country and 57% for Centre surveys. Data from both surveys were itemised to organisational, quality of care and educational aspects. Across the EU, only one paediatric rheumatologist is available per million population, located in one of the 288 centres with specialised PR care. In all EU member states, there is overall good access to specialist care and to approved medications, although off-label medication availability is worse in Eastern European countries. Full financial coverage is provided for most prescribed medications. PR education is widely available for physicians but is insufficient for allied health professionals. Participation in clinical trials is generally high. Among important gaps identified, lack of widely accepted clinical guidelines/recommendations; and insufficient adolescent transition management planning were highlighted. Conclusions: This study provides a comprehensive analysis of specialist PR service provision across Europe. Seen from the perspective of health care providers, there are no major differences between EU member states. Rarity, chronicity and complexity of diseases form a major challenge to paediatric rheumatology care. Therefore, strengthening subspecialty networks (Paediatric Rheumatology European Society, PReS, PRINTO, and SHARE) and the recently created European Reference Networks (ERN) will facilitate provision an dissemination of standards of care and treatment recommendations to further improve patient-centred healthcare across Europe.

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BackgroundChronic illness in a child is a complex reality for all involved. The child often feels confused and afraid. He doesn't understand why he is sick and in pain, he worries about the doctor and hospital visits, as well as the medications and shots to which he is subjected. Parents are unsure how the illness will affect their child, and how to best prepare him for future challenges. Both parent and child are not always sure how to communicate to the Doctor their needs and concerns. Communication, however, between parent, doctor, child and health professional is critical for the effective treatment of the disease.ObjectivesThis book attempts to open lines of communication between parent and child, to educate, give coping tools, and a voice to the young patient in a fun and optimistic manner. The book targets many of the children's challenges through identifying with Kipo, the young monkey who also has JIA.The objectives: 1. To give the child strength and tools to deal with his illness. 2. Improve compliance through a better understanding of treatment.MethodsA list of challenges young children with JIA face was compiled through meetings with parents, doctors and children. Next, a list of coping strategies was produced based on discussions with parents and health professionals. The story addresses the challenges and methods of dealing with them in a fun and optimistic manner through young Kipo's routine. Included are also messages addressed to the parent and doctor. To keep the child an active part of the story, thus allowing him to voice his concerns and discover coping skills, the story line requires active participation through “reading the pictures” which accompany the text. (The book includes a “how to read” guide). The back page includes a brief description of the illness, as well as other useful web addresses: parents associations, PRINTO, etc'.ResultsWorking jointly with the illustrator an illustrated children's book in 3 different languages (Hebrew, English and Arabic) was published. The book addresses the challenges and difficulties of a young child with JIA through the story of Kipo the monkey who is also ill. Included are a visit to the doctor, getting an injection, going to the physiotherapist, etc. The book is distributed free of charge though the paediatric rheumatologists to the families, and is received very enthusiastically by parents, children and doctors. The children read and reread the book sharing it with family, friends and kindergarten classrooms. They use the terminology introduced in the book to describe their own physical and emotional feelings, and adopt coping strategies used by Kipo.ConclusionsThe success of the book motivated us to allow for a more international distribution. The illustrations and the text are available allowing it to be used by any national group.AcknowledgementsInbar, Mifrakim Zeerim, ENCA, Dror Adam (illustrator), anonymous unaffiliated donors, doctors, parents and translators.Disclosure of InterestNone declared

There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals (HCPs), including general practitioners. To help improve international awareness and understanding of PRDs, World yOung Rheumatic Diseases (WORD) Day was established on 18 March 2019. Its aim was to raise awareness of PRDs and the importance of timely referral plus early diagnosis and access to appropriate treatment and support. A steering committee was established, and an external agency provided digital support. A social media campaign was launched in December 2018 to promote it, and analytics were used to measure its impact. Face-to-face and virtual events took place globally on or around WORD Day 2019, with 34 countries reporting events. Examples included lectures, social gatherings and media appearances. A total of 2585 and 660 individuals followed the official Facebook and Twitter accounts respectively, up until WORD Day. The official #WORDDay2019 hashtag was seen by 533,955 unique accounts on 18 March 2019 alone, with 3.3 million impressions. WORD Day 2019 was the first international campaign focused solely on PRDs. It demonstrated that despite awareness events being often resource-light, they can be implemented across a range of diverse settings. WORD Day has now become an annual global awareness event, facilitated by a growing network of patient, parent and professional community supporters.