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Background There is a challenging lack of evidence to inform best practice in the routine clinical care of juvenile idiopathic arthritis (JIA). Wide inter-centre variation in the definition and documentation of clinical data items is a major barrier to improvement. In response, we have developed a consensus agreed standardised core dataset called CAPTURE-JIA (n = 62 data items and a 'data dictionary' including agreed definitions of terms) designed to support routine collection of high-quality clinical data. The feasibility and acceptability of CAPTURE-JIA in clinical practice is not yet known and was the focus of this pilot study. Methods A purposeful sample of six paediatric rheumatology centres across England was invited to collect the CAPTURE-JIA dataset using paper collection forms (n = 20 patients/centre). The dataset was analysed for missing data. Six focus groups (n = 3-10) explored clinicians' views on acceptability and feasibility. Results One hundred and twenty-one patients were recruited over three months. The completeness of the dataset was similar across centres, with minor variations. The majority of data items (eg demographics, dates, ILAR type and examination) were >80% completed. However, 14/62 data items received >40% missing data. (Table 1) Further descriptive analyses highlighted incorrect completion of paper forms. Three themes emerged from the focus groups: problematic data items (missing from >10% forms at > 1 centre), format of clinician data forms and the role of digital data collection. Suggested solutions included minor changes to data item definitions and formatting. There were no refinements to the data items. Development of a digital data collection system was identified by all as essential. Due to a lack of clear consensus, the original CAPTURE forms included a number of ways to record joint count data. This proved confusing and a unanimous decision was taken to collect joint count data on all 83 joints in a tabular format. P10 Table 1: CAPTURE JIA data items with >40% missing data Data item  % forms with data item missing (if item required)  Relevant co-morbidities?  60  Macrophage activation syndrome?  100  Has the ILAR subtype changed?  50  Morning stiffness lasting >15 minutes?  42  History of any form of uveitis?  52  Date started uveitis mediation?  50  Strength of uveitis medication?  83  Counselled prior to new DMARD / biologic?  56  Enrolled in BECS/BCRD if new DMARD / biologic?  48  Joint count (homunculus or table format)  48  Physician assessment of systemic disease activity (VAS)  75  ESR  74  CRP  92  Plasma viscosity  100  Data item  % forms with data item missing (if item required)  Relevant co-morbidities?  60  Macrophage activation syndrome?  100  Has the ILAR subtype changed?  50  Morning stiffness lasting >15 minutes?  42  History of any form of uveitis?  52  Date started uveitis mediation?  50  Strength of uveitis medication?  83  Counselled prior to new DMARD / biologic?  56  Enrolled in BECS/BCRD if new DMARD / biologic?  48  Joint count (homunculus or table format)  48  Physician assessment of systemic disease activity (VAS)  75  ESR  74  CRP  92  Plasma viscosity  100  P10 Table 1: CAPTURE JIA data items with >40% missing data Data item  % forms with data item missing (if item required)  Relevant co-morbidities?  60  Macrophage activation syndrome?  100  Has the ILAR subtype changed?  50  Morning stiffness lasting >15 minutes?  42  History of any form of uveitis?  52  Date started uveitis mediation?  50  Strength of uveitis medication?  83  Counselled prior to new DMARD / biologic?  56  Enrolled in BECS/BCRD if new DMARD / biologic?  48  Joint count (homunculus or table format)  48  Physician assessment of systemic disease activity (VAS)  75  ESR  74  CRP  92  Plasma viscosity  100  Data item  % forms with data item missing (if item required)  Relevant co-morbidities?  60  Macrophage activation syndrome?  100  Has the ILAR subtype changed?  50  Morning stiffness lasting >15 minutes?  42  History of any form of uveitis?  52  Date started uveitis mediation?  50  Strength of uveitis medication?  83  Counselled prior to new DMARD / biologic?  56  Enrolled in BECS/BCRD if new DMARD / biologic?  48  Joint count (homunculus or table format)  48  Physician assessment of systemic disease activity (VAS)  75  ESR  74  CRP  92  Plasma viscosity  100  Conclusion Paper collection of the CAPTURE-JIA data items is feasible and acceptable in the routine clinical setting, but unlikely to be sustainable in the longer term if collected in duplicate with medical notes. A digital tool in the clinical domain, ideally interlocking with local systems, would offer many advantages, including more complete and time-efficient data collection. Conflicts of Interest The authors declare no conflicts of interest. [ABSTRACT FROM AUTHOR]

Background: In the first wave of COVID-19, the UK Government relied heavily on digital channels to provide information to the public. This disproportionately excluded older people - one of the groups with least access to (or experience of) using the internet. Approximately 11.5 million people in the UK lack digital skills and 4.8 million people never go online, with around half (51%) of these being aged over 65. The Greater Manchester (GM) response was to work collaboratively with a number of key Ageing groups to develop Keeping Well at Home, a booklet providing evidence based health and wellbeing information and advice for older people during COVID-19 restrictions. Methods: An evaluation of the booklet was undertaken during summer 2020 by the Healthy Ageing team at the Applied Research Collaboration GM. As national restrictions on movement remained in place at the time, a postal questionnaire was distributed to a sample of older adults in GM. Results: Nearly 500 questionnaires were returned. The response was overwhelmingly positive; 92% found the information helpful; 90% agreed the booklet would help older people stay healthy during lockdown; 74% had used the home exercises section; 78% found the tips for keeping their mind well helpful. Around 50% of respondents did not have internet access. Paper based resources was the preferred choice for 92% of respondents with only 6% opting for digital versions. Conclusions: The evidence from the evaluation challenges the growing trend towards communicating just through digital channels, and emphasises the need for tailored paper-based materials for older adults. The Keeping Well at Home booklet also shows the value of working with older adults to ensure the content and design are inviting to readers. Information, support and services must be made available in an offline equivalent and proactively disseminated to reach those who otherwise would not have access to it. Key messages: Print-based communications are preferred over digital for some groups; ensuring inclusivity is critical as the ‘digital by default’ approach excludes large numbers of our population. Including target group representatives as co-editors to advise on content and stylistic design is key to ensure content is relevant and useful. [ABSTRACT FROM AUTHOR]

Background Rituximab is an anti-CD20 chimeric monoclonal antibody that depletes pre-plasma B cells. It is used in paediatric rheumatology for conditions including juvenile systemic lupus erythematosus (jSLE), juvenile dermatomyositis (JDM), vasculitides and refractory juvenile idiopathic arthritis (JIA). We aim to describe the cohort of patients treated with rituximab in the Scottish Paediatric and Adolescent Rheumatology Network (SPARN) in a 5-year period, and assess the need for a network guideline. Methods A review of paper and electronic case records. Patients seen within the SPARN network who received Rituximab between 2014 and 2018 were included. Results Vasculitis Rituximab was given to 16 patients in 5 different SPARN centres between 2014 and 2018. Male: Female ratio was 1:4.3. Mean age at first dose of rituximab was 12.75 years. Mean disease duration pre rituximab was 1 year. 8 (50%) patients had jSLE, 7 multisystem and 1 isolated lupus nephritis. 3 had ANCA-positive vasculitis and 5 had other conditions. (1 had RF+ve JIA; 1 severe panuveitis; 1 had an unspecified autoinflammatory condition; 1 had COPA syndrome with severe interstitial lung disease and 1 had autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED). Documentation of pre-rituximab checks was poor. Baseline bloods were done in all 16 patients. 11 patients had lymphocyte subsets and 13 immunoglobulins documented. Disease-specific antibodies were measured in all patients in whom applicable (11). 11 had a chest x-ray prior to rituximab. In 9 cases a pre-rituximab pregnancy test was indicated: none were documented. In only 3 patients was a pre-rituximab history of recent infections documented. In 8 patients a discussion regarding treatment risks and benefits was documented. Post-infusion lymphocyte subset monitoring was variable but documented in 15. 1 patient was never B cell deplete. 9 never fully reconstituted. RTX dose information was available for 14. All received doses of 750mg/m2 with 6 having the dose capped at 1g. Dose frequency information was available for all. The majority (9) received 2 doses. Of the rest, 1 patient received a single dose. 3 received 3 doses, 2 had 4 and 1 had 5. All patients in whom information was available, received pre-medication with paracetamol, chlorphenamine and methylprednisolone (n = 14). 4 patients had side effects noted (rash/itch in 1, anaphylaxis in 1, facial flushing in 1 and post-infusion infection in 1). Clinical response was clearly documented in 8 patients, 7 of whom showed clinical improvement (2 had systemic jSLE, 2 had ANCA +ve vasculitis, 1 had isolated lupus nephritis, 1 had COPA syndrome and 1 had RF+ JIA). Conclusion Rituximab is used for a range of conditions and in a number of centres within SPARN. This review highlights variation in and poor documentation of pre-rituximab discussions and investigations, prescribing, monitoring and response. A SPARN rituximab protocol is being developed to address this. Conflicts of Interest The authors declare no conflicts of interest. [ABSTRACT FROM AUTHOR]

Background There is a need for additional treatment options in refractory JIA uveitis which has responded inadequately to MTX and anti TNFα. There has been interest in the use of tocilizumab, the APTITUDE trial using SC tocilizumab in JIA uveitis and the STOP-Uveitis study comparing 2 dosing regimens of iv tocilizumab in adults. Anecdotal evidence reports JIA uveitis patients who were stable on IV tocilizumab flaring when switched to sc administration. We describe the successful use of IV tocilizumab and concurrent sc MTX in two cases. Methods Retrospective review of patient paper and electronic medical records. Results Case 1.: A five-year-old female presented with severe anterior uveitis in her right eye. She was diagnosed with idiopathic uveitis and treated with topical steroid, oral then SC MTX infliximab, mycophenolate and adalimumab, all with inadequate control of her uveitis. At the age of 12, on adalimumab, she developed arthritis and her diagnosis was changed to JIA uveitis. 7 years after initial diagnosis she was commenced on IV tocilizumab 8mgs/kg 4-weekly with improved control of her uveitis although initially still requiring some topical steroid. She required intra-articular steroids for active arthritis and agreed to restart SC MTX. On tocilizumab and MTX combined, her arthritis settled and her topical eye drops were weaned for the first time since diagnosis. From age 5 until 14 she was continually on topical steroids, consequently developing raised intraocular pressure and a dense cataract. With improved disease control she had cataract surgery aged 14. She has maintained good disease control for the last five years on the combination of IV tocilizumab and SC MTX and has not required any further steroids. Case 2: A 3 year old female with oligoarticular JIA had severe bilateral uveitis at presentation. Initial treatment was with oral prednisolone, topical steroid and SC MTX. 6 months after diagnosis her uveitis remained active and she was commenced on infliximab with additional IV methylprednisolone. Venous access was challenging, required a portacath to facilitate treatment. By the age of 6 she had developed a cataract requiring surgery and still had incomplete control of her uveitis. Infliximab was increased to 10mgs/kg 4 weekly with little further benefit and at the age of 7 she was changed to adalimumab. On this she developed macular oedema requiring pulse IV methylprednisolone. 5 years after diagnosis she was commenced on IV tocilizimab initially 4 weekly, increasing after three months to 2 weekly. Her methylprednisolone was weaned and she has subsequently maintained good disease control on IV tocilizumab 10mgs/kg 2 weekly with SC methotrexate. Conclusion We describe two cases of refractory JIA and uveitis in whom IV tocilizumab with SC methotrexate has provided good disease control. Further studies are required to determine the optimal dosing regimen. Conflicts of Interest The authors declare no conflicts of interest. [ABSTRACT FROM AUTHOR]

Poster presentation Tuesday 8 October Background Over one in four children and young people (CYP) present to paediatric rheumatology services with non-inflammatory conditions. However, there is a lack of evidence-based treatments and clinical guidelines supporting the management of these patients. Our project aims to determine whether CYP diagnosed with different non-inflammatory conditions and their families are satisfied with the service offered by the paediatric rheumatology department at Leeds General Infirmary. In addition, we wanted to assess which interventions they found most helpful and to check if there were differences between children and young people diagnosed with different non-inflammatory conditions. Methods 632 patients seen by Leeds paediatric rheumatology between July 2017 and June 2018 were diagnosed with non-inflammatory conditions; the three most common groups of conditions were symptomatic hypermobility (SH), chronic pain syndrome (CPS) and muscular back pain (MBP). We undertook a patient satisfaction survey, including patients reported assessment of their physical and psycho-social outcomes, focussing on these three groups only. 198 participants (80 SH; 74 CPS; 44 MBP) were invited to the study by sending them a postal questionnaire with self-addressed and stamped envelopes to return them. The questionnaire did not include any identifiable patient information but a different coloured paper was sent to patients with the three different groups of diagnoses to allow comparison of these groups. All had attended the paediatric rheumatology clinic for their initial assessment and had been referred on to appropriate management services as for the treating clinician including physiotherapy, occupational therapy, podiatry/orthotics, pain management, and/or psychology. Results A total of 33 filled questionnaires were received over the next 2 months including 4 (9.09%) from patients diagnosed with MBP, 11 (13.75%) from patients diagnosed with SH and 18 (24.32%) from patients diagnosed with CPS. Mann-Whitney-U calculations were performed to compare groups. The CPS patient group derived less benefit from physical therapies compared with non-CPS patients (U = 35.5, p = 0.0251) and that their reported mental health is worse than non-CPS patients (U = 31.5, p = 0.034). Within the CPS group, patients benefitted more from occupational therapy (U = 13.5, p = 0.01242) and pain management clinic (U = 9.5, p = 0.0226) than podiatry/orthotics services. When asked to rate their overall satisfaction out of 10, the median scores for the SH and MBP groups were 9 and 10 respectively, the median score for the CPS group was 5. Conclusion Our data would suggest that patients suffering with CPS would benefit from a more holistic approach including referrals to a psychologist, occupational therapy and the pain management team. The CPS group seemed most dissatisfied with the services provided by the clinic. The results of the project were fed back to the clinical team and we hope to repeat the survey in future after potential changes suggested by the survey have been implemented. Conflicts of Interest The authors declare no conflicts of interest. [ABSTRACT FROM AUTHOR]