Verrucae pedis in children with Juvenile Idiopathic Arthritis and other paediatric rheumatic diseases: a cross-sectional study.

Background Verrucae pedis (VPs) are a common viral infection of the skin seen in children. There are limited studies of the prevalence, duration and impact of VPs in children who are immunosuppressed. The studies available suggest that, in these children, the warts are more widespread and are more long-standing. The primary aim of this study was to determine the prevalence of VPs in children attending rheumatology clinics who may have some degree of immunosuppression due to their prescribed medication and compare this to the reported prevalence in the healthy population. Method Children attending out-patient rheumatology appointments who had a paediatric rheumatology consultant named as the lead clinician, were recruited. The young people were aged between four and 17 years old. A visual inspection of both feet was used to identify potential VPs. Diagnosis of a VP was confirmed on observation of the typical clinical features of a VP. The location, duration of presence, previous treatments, presence of VPs in other family members and psychological impact was recorded. Results A total of 71 children were included. Of the group, 55 children had no VPs present, 16 children had one or more VPs. The prevalence of VPs was 22.5%. Medication impacting on the immune system was prescribed in 80% of the group. There appeared to be no greater chance of having VPs if taking immunosuppressive medication than compared to having no medication (OR = 1.1, 95%CI 0.26 to 4.48, p = 0.46). Children with VPs tended to be 9 years old or older with few children in the older age range (13–17 yrs) having VPs suggesting that most VPs do resolve by the teenage years. In total, 37.5% of the young people with VPs had lesions that had been present for 24 months or more. Two-thirds of the subjects were not concerned about VPs being present and most subjects with a VP did not know what it was, but despite this the majority of subjects (81%) had sought treatment for the VPs. Conclusion Children with JIA and other rheumatic conditions have no greater prevalence of VPs compared to the general population. The VPs present were of a similar clinical type and did not seem to be more widespread or unusual as has been reported in other immunocompromised populations. The percentage of lesions remaining beyond 24 months was found to be slightly greater than has been reported in other healthy populations. The children in this study seemed to be less concerned psychologically about their VPs, despite this most families had sought treatment for the verrucae.

Delivery of paediatric rheumatology care: a survey of current clinical practice in Southeast Asia and Asia-Pacific regions

Background Paediatric rheumatic diseases are a leading cause of acquired disability in Southeast Asia and Asia-Pacific Countries (SE ASIA/ASIAPAC). The aims of this study were to identify and describe the challenges to the delivery of patient care and identify solutions to raise awareness about paediatric rheumatic diseases. Methods The anonymised online survey included 27 items about paediatric rheumatology (PR) clinical care and training programmes. The survey was piloted and then distributed via Survey-Monkey™ between March and July 2019. It was sent to existing group lists of physicians and allied health professionals (AHPs), who were involved in the care pathways and management of children with rheumatic diseases in SE ASIA/ASIAPAC. Results Of 340 participants from 14 countries, 261 participants had been involved in PR care. The majority of the participants were general paediatricians. The main reported barriers to providing specialised multidisciplinary service were the absence or inadequacy of the provision of specialists and AHPs in addition to financial issues. Access to medicines was variable and financial constraints cited as the major obstacle to accessing biological drugs within clinical settings. The lack of a critical mass of specialist paediatric rheumatologists was the main perceived barrier to PR training. Conclusions There are multiple challenges to PR services in SE ASIA/ASIAPAC countries. There is need for more specialist multidisciplinary services and greater access to medicines and biological therapies. The lack of specialist paediatric rheumatologists is the main barrier for greater access to PR training.

Establishing an international awareness day for paediatric rheumatic diseases: reflections from the inaugural World Young Rheumatic Diseases (WORD) Day 2019

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.

Article placement order in rheumatology journals: a content analysis

ObjectivesTo analyse variables associated with article placement order in serial rheumatology journals.DesignContent analysis.SettingOriginal articles published in seven rheumatology journals from 2013 to 2018.Primary and secondary outcome measuresThe following data were extracted from 6787 articles: order number of article in issue, gender of first and last author, geographical region, industry funding, research design and disease category. Cumulative density function plots were used to determine whether article placement distribution was different from the expected distribution. ORs for articles published in the first three places of an issue compared with the last three places were calculated. Altmetric Score and downloads were meta-analysed.ResultsArticle placement order did not associate with author gender or geographical region but was associated with funding source and research design. In addition, articles about rheumatoid arthritis were more likely to be ordered at the front of issues (p<0.001). Articles about crystal arthritis, systemic lupus erythematosus, vasculitis, pain syndromes and paediatric rheumatic diseases were more likely to be ordered at the end of issues (all p<0.001). Association of article placement order with disease category was observed only in journals with tables of contents grouped by disease. Articles ordered in the first three places had higher Altmetric and download rates, than articles in the last three places.ConclusionsAuthor gender and geographical region do not influence article placement order in serial rheumatology journals. However, bias for certain disease categories is reflected in article placement order. Editorial decisions about article placement order can influence the prominence of diseases.

OP0259-PARE WORLD YOUNG RHEUMATIC DISEASES (WORD) DAY: THE FIRST INTERNATIONAL AWARENESS DAY FOR PAEDIATRIC RHEUMATIC DISEASES

Background:There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals, such as general practitioners [1]. To help improve awareness and understanding of PRDs, World Young Rheumatic Diseases Day (WORD Day) was established in 2019.Objectives:The aim of WORD Day, which took place on 18 March 2019, was to raise awareness of PRDs, while informing young people, families, healthcare professionals, teachers, and the public about the importance of timely referral plus early diagnosis and access to appropriate treatment and support.Methods:A steering committee was established for the inaugural campaign. An external agency was appointed to provide digital support, with an official social media campaign launching in December 2018. Social media analytics were used to measure the impact of official social media platforms. A range of branded materials were also made available (Fig 1), including an official campaign video. In addition, a specific engagement activity (#ButtonChallenge2019) was launched. This challenged participants to button up a piece of clothing while wearing gloves, to simulate the difficulties that young people with PRDs face undertaking daily activities. As part of the campaign launch, a list of suggested activities were provided, along with template press releases.Results:Several face-to-face and virtual events took place globally on or around WORD Day 2019, with 34 countries reporting events (Fig 2). Examples of events included lectures, social gatherings and media appearances. An official WORD Day tweet chat was also hosted. Regarding social media impact, between December 2018 and March 2019, a total of 2,585 and 660 individuals followed the official Facebook and Twitter accounts, respectively. Facebook posts were seen 646,000 times since the start of the campaign, with over 60,000 of Facebook reach from posts published on 18 March 2019 exclusively. A total of 270,800 impressions were observed on Twitter. The official #WORDDay2019 hashtag was seen by 533,955 unique accounts on 18 March 2019 alone, with 3,334,699 impressions. Posts with the hashtag were retweeted 1,112 times on WORD Day, with a total of 1,568 tweets recorded that day. With regards to the #ButtonChallenge2019, the challenge video was viewed for 6,700 minutes and received participation from across the world. Compared to the industry benchmark, the average engagements per post for WORD Day-related content was significantly higher compared to other medical and non-for-profit social media pages.Conclusion:WORD Day 2019 was the first international campaign focused solely on PRDs. Organic and paid social media content aided the dissemination of the WORD Day message, with Facebook proving to be the most popular social platform. Despite a wealth of different content published, authentic materials, namely video content, proved to be the most popular with users, particularly when it featured material designed by and with young people with PRDs. It was demonstrated that awareness events can often be resource-light and easily implemented across a range of diverse countries. It is anticipated that the global reach of WORD Day will increase over time as the campaign becomes more established.References:[1]Egert Y et al. Children and young people get rheumatic disease too. The Lancet Child & Adolescent Health. 2019;3(1):8-9.Acknowledgments:PReS for their financial support.Disclosure of Interests:Simon Stones Consultant of: I have been a paid consultant for Envision Pharma Group and Parexel. This does not relate to this abstract., Speakers bureau: I have been a paid speaker for Actelion and Janssen. These do not relate to this abstract., Eve Smith: None declared, Sammy Ainsworth: None declared, Veerle Buys: None declared, Wendy Costello: None declared, Yona Egert: None declared, Helen Foster: None declared, Lovro Lamot: None declared, Berent J. Prakken: None declared, Christiaan Scott: None declared

Enhancing communication and social engagement among clinicians and research teams to improve reliability of research recruitment

The success of rare disease research relies heavily on robust partnerships with clinicians to help identify new patients and collect samples. Many studies for paediatric rheumatic diseases requiring pretreatment samples have suffered from slow enrolment rates due to the low incidence of disease and relative urgency to treat. Therefore, timely identification of all potentially eligible patients is crucial. The objective of this project was to apply quality improvement methods to increase the frequency and timeliness of identification of eligible patients with new paediatric rheumatic diagnoses to approach for research studies. A retrospective chart review was undertaken in our paediatric rheumatology clinic to measure the number of eligible patients identified for potential research recruitment between missed recruitment opportunities. Improvement methodology was used to integrate standardised communication between clinicians and the research team into clinic workflow, to leverage social feedback as positive reinforcement for good communication and to measure change in response to the interventions. The number of eligible patients identified between missed recruitment opportunities increased from every 0–1 patient to every 14 patients during the project period, corresponding to an increase in the overall identification rate from 32% to 91% of all eligible patients. Quality improvement methods can be used to successfully integrate research recruitment into routine clinical care and accelerate advances necessary to improve health outcomes.

Pattern and Frequency of Anti-nuclear Antibody Positivity in Paediatric Rheumatic Diseases

Background: Anti-nuclear antibodies (ANAs) are specific antibodies directed against a variety of nuclear antigens detected in the serum of patients with many rheumatic and non-rheumatic diseases.These antibodies are not only involved in the pathogenesis, but also constitute the basis for diagnosis and treatment of paediatric rheumatic diseases. The objective of the study was to identify the patterns and frequency of ANA positivity in Paediatric Rheumatic Diseases. Methodology: It was a retrospective study. Fourteen hundred and sixty eight records of paediaric rheumatology patients were analyzed. Statistical analysis were done to observe the frequency and association of different patterns of ANA in Juvenile idiopathic arthritis and systemic lupus erythematosus patients. Results: Among the 1468 patients of PRDs, frequency of JIA cases was the highest (65 %) followed by SLE, Scleroderma, juvenile dermatomyositis, and others. Among the 261 PRD patients ANA positivity was 65%. ANA positivity was 100%, 92%, 40% and 31.5% in Mixed connective tissue disease, SLE, JDM and Scleroderma patients respectively. Homogenous staining pattern was found in 59% and speckled pattern in 22.9%. There was significant association between ANA positivity and uveitis in oligoarticular JIA patients. Significant association was also found between homogeneous patterns of ANA and renal involvement in SLE patients. Conclusion: ANA positivity was highest in MCTD cases followed by SLE cases. Majority of SLE cases had homogeneous pattern of ANA.Staining patterns of ANA had significant association with the clinical manifestations in SLE and JIA cases. Bangladesh J Child Health 2019; VOL 43 (1) :21-26

Consensus-based recommendations for the management of juvenile localised scleroderma

In 2012, a European initiative called Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile localised scleroderma (JLS) is a rare disease within the group of paediatric rheumatic diseases (PRD) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians’ experience. This study aims to provide recommendations for assessment and treatment of JLS. Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was formed, mainly from Europe, and consisted of 15 experienced paediatric rheumatologists and two young fellows. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using a nominal group technique. Recommendations were accepted if ≥80% agreement was reached. In total, 1 overarching principle, 10 recommendations on assessment and 6 recommendations on therapy were accepted with ≥80% agreement among experts. Topics covered include assessment of skin and extracutaneous involvement and suggested treatment pathways. The SHARE initiative aims to identify best practices for treatment of patients suffering from PRDs. Within this remit, recommendations for the assessment and treatment of JLS have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JLS throughout Europe.