scholarly journals Trends in paediatric rheumatology referral times and disease activity indices over a ten-year period among children and young people with Juvenile Idiopathic Arthritis: results from the childhood arthritis prospective Study

Rheumatology ◽  
2016 ◽  
Vol 55 (7) ◽  
pp. 1225-1234 ◽  
Author(s):  
Flora McErlane ◽  
Helen E. Foster ◽  
Roberto Carrasco ◽  
Eileen M. Baildam ◽  
S. E. Alice Chieng ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Prospective Study ◽  
Disease Activity ◽  
Paediatric Rheumatology ◽  
Children And Young People ◽  
Childhood Arthritis ◽  
Activity Indices

scholarly journals OP0278-PARE PROVIDING SUPPORT TO FAMILIES OF CHILDREN NEWLY-DIAGNOSED WITH CHILDHOOD ARTHRITIS: A PATIENT AND PARENT-LED PILOT STUDY TO DEVELOP AND ASSESS ‘A LITTLE BOX OF HOPE’ SUPPORT PACKS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.1-169
Author(s):  
S. Chibnell-Smith ◽  
A. L. Chibnell-Smith ◽  
R. Beesley
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Pilot Study ◽  
Young People ◽  
Musculoskeletal Diseases ◽  
Paediatric Rheumatology ◽  
Free Text ◽  
Newly Diagnosed ◽  
Online Questionnaire ◽  
Children And Young People ◽  
Childhood Arthritis

Background:Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Delays in diagnosis are common [1], awareness is low, and paediatric rheumatological conditions have a considerable impact on young people and their families [2]. A lack of understanding amongst families of newly-diagnosed children leads to uncertainty and anxiety.Objectives:This patient and parent-led project developed a resource pack for parents of CYP newly-diagnosed with JIA, to provide information and support. Following a pilot, feedback from recipients was collated and analysed to help improve future provision.Methods:A young person with JIA identified the need for direct family support. Juvenile Arthritis Research (a UK charity) developed a unique pack of support information, containing resources for both children and their families - called A Little Box Of Hope. This included information about JIA and support services available for families, as well as Kipo (a children’s book about JIA) and accompanying finger puppet. Clinicians at one paediatric rheumatology centre provided information about the packs to newly diagnosed families, who then requested a free box to be posted to them.Following an initial pilot study, recipients were invited to complete a short online questionnaire and provide feedback to allow refinement of the provision.Results:Respondents were asked a series of questions, each on a scale of 1-5. Every respondent gave a score of 5 in response to “What do you think of the idea of A Little Box Of Hope?”Every parent of children under ten years old gave a score of 5 for every item when asked “How useful is each item in your Little Box Of Hope?”Respondents also gave free-text comments:* “It was very well thought out and I felt supported”* “I know so much more about JIA now than I did before. I cannot thank you enough.”* “It was extremely useful and made me feel supported during a very stressful time and this enabled me to support my son more effectively.”* “It made my daughter feel less alone.”Some parents of older children felt that some information specifically for teens would be useful, and a Teen pack is being developed.Conclusion:Recipients of A Little Box Of Hope have found the information useful and feel supported. Following the pilot study, we have developed My JIA, a booklet reviewed by a multi-disciplinary clinical team, with comprehensive information for families affected by JIA. A Teen pack, for children aged around 10 years or older, is being developed to provide targeted support to this group.The COVID-19 pandemic has adversely affected access to healthcare services, increasing the need for remote parent- and charity-provided support through A Little Box Of Hope.As such, we intend to expedite the roll-out of the project across the country building on the success of the pilot project.References:[1]McErlane F, Foster HE, Carrasco R, et al. Trends in Paediatric Rheumatology Referral Times and Disease Activity Indices over a Ten-Year Period among Children and Young People with Juvenile Idiopathic Arthritis: Results from the Childhood Arthritis Prospective Study. Rheumatology (Oxford) 2016;55(7):1225–34.[2]Foster HE, Scott C, Tiderius CJ, et al. Improving Musculoskeletal Health for Children and Young People - A “Call to Action”. Best Pract Res Clin Rheumatol 2020;34(5):101566.[3]Dejaco C, Alunno A, Bijlsma JWJ, et al. Influence of COVID-19 Pandemic on Decisions for the Management of People with Inflammatory Rheumatic and Musculoskeletal Diseases: A Survey among EULAR Countries. Ann Rheum Dis 2020;0:1-9.Disclosure of Interests:None declared

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

scholarly journals Different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis: the SIRJIA mixed-methods feasibility study

2020 ◽  
Vol 24 (36) ◽  
pp. 1-152
Author(s):  
Ashley P Jones ◽  
Dannii Clayton ◽  
Gloria Nkhoma ◽  
Frances C Sherratt ◽  
Matthew Peak ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Disease Activity ◽  
Health Care Professionals ◽  
Disease Activity Score ◽  
Controlled Trial ◽  
Juvenile Arthritis ◽  
Children And Young People ◽  
Randomised Controlled ◽  
The Uk

Background In the UK, juvenile idiopathic arthritis is the most common inflammatory disorder in childhood, affecting 10 : 100,000 children and young people aged < 16 years each year, with a population prevalence of around 1 : 1000. Corticosteroids are commonly used to treat juvenile idiopathic arthritis; however, there is currently a lack of consensus as to which corticosteroid induction regimen should be used with various disease subtypes and severities of juvenile idiopathic arthritis. Objective The main study objective was to determine the feasibility of conducting a randomised controlled trial to compare the different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis. Design This was a mixed-methods study. Work packages included a literature review; qualitative interviews with children and young people with juvenile idiopathic arthritis and their families; a questionnaire survey and screening log to establish current UK practice; a consensus meeting with health-care professionals, children and young people with juvenile idiopathic arthritis, and their families to establish the primary outcome; a feasibility study to pilot data capture and to collect data for future sample size calculations; and a final consensus meeting to establish the final protocol. Setting The setting was rheumatology clinics across the UK. Participants Children, young people and their families who attended clinics and health-care professionals took part in this mixed-methods study. Interventions This study observed methods of prescribing corticosteroids across the UK. Main outcome measures The main study outcomes were the acceptability of a future trial for children, young people, their families and health-care professionals, and the feasibility of delivering such a trial. Results Qualitative interviews identified differences in the views of children, young people and their families on a randomised controlled trial and potential barriers to recruitment. A total of 297 participants were screened from 13 centres in just less than 6 months. In practice, all routes of corticosteroid administration were used, and in all subtypes of juvenile idiopathic arthritis. Intra-articular corticosteroid injection was the most common treatment. The questionnaire surveys showed the varying clinical practice across the UK, but established intra-articular corticosteroids as the treatment control for a future trial. The primary outcome of choice for children, young people, their families and health-care professionals was the Juvenile Arthritis Disease Activity Score, 71-joint count. However, results from the feasibility study showed that, owing to missing blood test data, the clinical Juvenile Arthritis Disease Activity Score should be used. The Juvenile Arthritis Disease Activity Score, 71-joint count, and the clinical Juvenile Arthritis Disease Activity Score are composite disease activity scoring systems for juvenile arthritis. Two final trial protocols were established for a future randomised controlled trial. Limitations Fewer clinics were included in this feasibility study than originally planned, limiting the ability to draw strong conclusions about these units to take part in future research. Conclusions A definitive randomised controlled trial is likely to be feasible based on the findings from this study; however, important recommendations should be taken into account when planning such a trial. Future work This mixed-methods study has laid down the foundations to develop the evidence base in this area and conducting a randomised control trial to compare different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis is likely to be feasible. Study registration Current Controlled Trials ISRCTN16649996. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 36. See the NIHR Journals Library website for further project information.

scholarly journals P20 Biosimilar use in children and young people with juvenile idiopathic arthritis in a real-world setting in the United Kingdom

Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_4) ◽  
Author(s):  
Lianne Kearsley-Fleet ◽  
Rebecca Adam ◽  
Eileen Baildam ◽  
Michael W. Beresford ◽  
Helen E. Foster ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Disease Activity ◽  
Biologic Therapy ◽  
Conflicts Of Interest ◽  
Musculoskeletal Diseases ◽  
Active Joint ◽  
Children And Young People ◽  
The United Kingdom

Abstract Background Most research concerning biosimilar use in musculoskeletal diseases has been conducted in adults. Little to no data regarding the use of biosimilars in children and young people with juvenile idiopathic arthritis (JIA) exist. Our aim was to describe the characteristics of children and young people with JIA starting biosimilars in the United Kingdom (UK) with musculoskeletal diseases. Methods The Biologics for Children with Rheumatic Diseases (BCRD) study is an ongoing prospective UK study recruiting children and young people with JIA starting biologic therapies other than etanercept originator (followed in a separate parallel study) from 2010 onwards. Baseline information is collected via questionnaires completed by the treating physician or affiliated clinical research nurse. Follow-up data including disease activity measures and changes in drug therapy are collected at six months, one year and annually thereafter. From May-2015, data has been captured on anti-TNF biosimilars in the UK. Results To 18 June 2019, 159 patients had started a biosimilar; 84 (53%) infliximab (2 products), 60 (38%) etanercept (2 products), and 15 (9%) adalimumab. Of these, 53 (33%) started the biosimilar as their first biologic therapy. Fifty (31%) patients switched from their originator, median (IQR) time on originator before switch was 2.2 (1.1-4.1) years, with most citing cost or hospital policy (n = 22) as the reason and these patients had low disease activity (median active joint count was zero) at point of switch. Fifty-six (35%) patients switched to a biosimilar from a non-originator biologic with 37 (66%) switching for efficacy reasons and 13 (23%) for safety reasons, with higher disease activity reported (median active joint count was three); most (n = 32) switching from adalimumab. Follow-up data was available in 143 patients; median follow-up time was 1.1 (0.7, 1.9) years. Sixty-seven patients switched to another biologic in this period. The majority (n = 38) switched to a non-originator biologic, predominantly adalimumab (n = 22) or tocilizumab (n = 14). Nineteen patients switched between infliximab biosimilars. Ten patients switched to the originator biologic (two due to inefficacy, four due to adverse events, four due to painful injections), although only four of these were on the originator prior to starting biosimilar; overall, in patients who switched from originator to biosimilar, 8% switched back to the originator. Conclusion Biosimilars in children and young people with JIA are being used as both first-line and subsequent-line biologic therapy. Patients starting a biosimilar from an originator product had lower disease activity and reported switching due to cost reasons, whilst patient starting a biosimilar from a non-originator were doing so due to inefficacy. Overall tolerance of biosimilar appears to be good so far, with few patients switching back to the originator. It is imperative that these patients continue to be followed within the registers so that effectiveness and safety of these treatments can be captured. Conflicts of Interest The authors declare no conflicts of interest.

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