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.

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Objectives Effectiveness of the BNT162b2 mRNA COVID-19 vaccine for adolescents with juvenile-onset inflammatory rheumatic diseases (IRD) is unknown. Several studies suggested attenuated immunogenicity in patients with IRD. This study evaluated the effectiveness of the BNT162b2 mRNA COVID-19 vaccine in preventing COVID-19 infection in adolescents with juvenile-onset IRD compared with controls without immune rheumatic disease. Methods We used data from Clalit Health Services, the largest healthcare organization in Israel, to conduct an observational cohort study from February to December 2021, involving adolescents 12–18 years-old, diagnosed with IRD. Study outcomes included documented COVID-19 infection in relation to vaccination status and immunomodulatory therapy. We estimated vaccine effectiveness as one minus the risk ratio. Adolescents without immune rheumatic disease, 12–18 years-old, served as controls. Results A total of 1,639 adolescents with IRD (juvenile idiopathic arthritis, systemic lupus erythematosus, or familial Mediterranean fever) were included and compared with 524 471 adolescents in the same age range. There was no difference in COVID-19 infection rates after the second dose of vaccine for those with IRD and controls (2.1% vs 2.1% respectively, p= 0.99). The estimated vaccine effectiveness for adolescents with IRD was 76.3% after the first dose, 94.8% after the second and 99.2% after the third dose. Conclusion We found that the BNT162b2 mRNA vaccine is effective against COVID-19 infection in adolescents with IRD, similar to controls without immune rheumatic disease. Immunomodulatory therapy did not affect its effectiveness. These results can encourage adolescents with IRD to get vaccinated against COVID-19.

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