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

Abstract

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.

Educational initiatives and training for paediatric rheumatology in Europe

“…PReS aims to improve the lives of children with rheumatic diseases through collaborative networking to raise awareness, facilitate high quality research to create new knowledge, support education and training, promote advocacy and ‘best care ’ based on evidence, consensus and active consumer engagement. The importance of education and training activities to achieve these aims and address unmet need within Europe has been highlighted following the SHARE initiative (Single Hub Access for Rheumatology care, European Agency Health and Consumers, grant number 2011 1202, [ [ 1 ] Wulffraat N, 2013, [ 2 ] van Dijkhuizen EHP, 2018]) and reported in Work package 4, SHARE project, Dolezolva P (submitted for publication).…”

Usability of eHealth and Mobile Health Interventions by Young People Living With Juvenile Idiopathic Arthritis: Systematic Review (Preprint)

“…Feedback from parent and carer surveys also suggests that pediatric rheumatology services need to improve the quality of their service and the patients' experience. Responses suggest they need to optimize their efficiency, improve information exchange [26,27], promote ongoing interdisciplinary support networks [26][27][28], and improve access to a JIA experienced clinician when needing urgent advice [27] or experiencing an unpredictable flare of disease, complications, adverse reactions [26], or illness [28].…”

‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study

“…Prompt referral to an experienced paediatric rheumatology multidisciplinary team (PRh MDT) is recommended as soon as the diagnosis is suspected and in the UK the target is for the first assessment within 4 weeks of referral and 10 weeks from the initial onset of symptoms [ 8 ]. Unfortunately, for many CYP with incident JIA, delay in diagnosis and access to appropriate treatment remains a common problem reported around the world [ 3 , 4 , 9 – 12 ] and is a source of frustration and anxiety for parents and CYP [ 13 , 14 ]. The reasons for delay are likely to be multi-factorial [ 3 , 4 , 15 , 16 ], can occur at any point in the patient journey and may be influenced by a number of contextual factors [ 3 ]: patient and family factors (e.g.…”