P03 Utilizing a videography platform for the therapeutic management of chronic pain relating to Hypermobility in children and young people

Abstract Introduction/Background Many patients present to Paediatric Rheumatology clinic, (53%) with chronic pain related to Hypermobility. Pre-Covid, an evidenced based hypermobility class was developed and run by the Allied Health Professional team for children and young people (C & YP), and their parents/carers. These 6 classes were group-based and included education and exercise therapy but were stopped due to the pandemic. Feedback gained was good from the class, although reported issues included reduced school attendance, accessibility due to location, parental time off work, financial and time implications of travel, and unsuitability of group interventions for CYP with social anxiety and autism disorders. Description/Method A digital platform (Vimeo) was used to present Hypermobility education and exercise content created by the Paediatric Rheumatology team. The video aims to address these barriers, allowing more equality of access for all CYP; digital access allows CYP and parents to re-visit this information at any time, providing ongoing support for long term management of this condition. The digital platform is being developed to maximize the effectiveness of therapy resources and to improve the patients experience to promote self-management of their hypermobility. Funding was applied for via the Transformation service. Meeting with the hospital videographer enabled the AHP team to devise a template for the video including education on what is Hypermobility, on the role of exercise - targeted versus general, the benefits of exercise, supportive footwear, pain management, pacing, sleep hygiene, and hand function advice to manage hypermobility. The class exercise programme including hand therapy was videoed using a model. The video was filmed in half a day. It was filmed using an unscripted question- and- answer format. The Paediatric Rheumatology MDT were filmed in the video. The digital platform is currently with our videography team for further edit. Further signposting to established resources will be included in the Vimeo resource. Following a final edit, this resource will be used for this patient population group. Feedback from CYP and parents, along with other health professionals is planned. Discussion/Results On receipt of the first edit, multi-source feedback from parents/carers, CYP and other health professionals is planned via Microsoft Teams. It is hoped to show the video via Teams and seek anonymized feedback on the Teams chat function. This feedback will be discussed by the Paediatric Rheumatology MDT and will inform the final edit of the Hypermobility video resource. Further data from Vimeo analytics will be gathered e.g. how many times video watched, how long video is watched for, and what devices are being used. It is hoped that the Hypermobility Video will help support CYP and families in the long-term management and pain resulting from this condition. Key learning points/Conclusion It is hoped that the use of new technologies and innovative ways of delivering care can enable health professionals to implement clinical support, improve self-management of chronic pain related to hypermobility, whilst improving equitable patient access to therapy across the North-West. Multi-source feedback will help inform the final edit of the video resource. Ongoing evaluation and analysis of Vimeo data will inform whether the resource is a useful adjunct in long term management of pain arising from Hypermobility.

Introduction/Background: Children and Young People (CYP) spend a considerable amount of time at school, college or other educational settings. Whilst most CYP with Juvenile Idiopathic Arthritis (JIA) are able to access education, many require adaptations, awareness of their needs or specific support to enable them to fully engage in learning. Families of CYP with JIA have reported a lack of awareness and understanding and requested resources to enable schools to support their children in school. The aim of this work was to develop a School Toolkit to allow teachers and other school staff to confidently support CYP with JIA. Description/Method: Using a network of parents of CYP with JIA, UKbased charity Juvenile Arthritis Research developed a series of resources aimed at schools, colleges, pre-schools and other educational settings. Given awareness of childhood arthritis is low, the Toolkit includes awareness-raising resources, aimed both at staff and all families connected to the school. Increased awareness can help improve diagnosis times and timely access to treatment in those not yet diagnosed. In addition, the Toolkit contains information about what JIA is, resources for schools to provide targeted interventions, and information on how schools can successfully support CYP with JIA. Finally, each Toolkit contains both a presentation for explaining arthritis to children in a classroom or group assembly setting, and a training presentation for delivery to staff, as well as digital copies of key materials and awareness-raising resources for distribution to parents and families. Discussion/Results: In the week after launching the new School Toolkit, over 20 kits were sent to schools in the UK, potentially providing information that arthritis affects children to over 20,000 families with a further 35 Toolkits in the subsequent month. Schools have advised they are using the resources in their settings, including giving lessons to children to explain what arthritis is, putting up posters highlighting the key signs and symptoms of JIA, and utilising the staff training resources. Feedback from schools was entirely positive, with one teacher reporting "Wow-it's fantastic, the student presentation is particularly impressive with how it translates all the key information in a child friendly manner." Key learning points/Conclusion: The development and supply of a Toolkit specifically for use in schools and colleges has helped raise awareness that children get arthritis and provided resources to train and support school staff enabling them to confidently support CYP with JIA. Utilising the experience and skills of parents and teachers in the development of the Toolkit has ensured all resources are relevant and address the needs of both families and schools. Toolkits can be requested free of charge by schools in the UK from http://www.jarpro ject.org/toolkit Acknowledgements: Thanks to the children, young people, families and schools involved in the development of this vital resource.

TO RAISE AWARENESS THAT
GET ARTHRITIS, ENABLING PROFESSIONALS TO REFER TO SPECIALIST SERVICES United Kingdom, and with Arthritis, Geneva, Switzerland nd: Awareness that Children and Young People p arthritis (Juvenile Idiopathic Arthritis, JIA) is low within ion and amongst non-rheumatology frontline health can lead to delays in diagnosis and reduced access to sequential risk of joint damage and permanent eye ugh undiagnosed JIA-associated uveitis. The aim of this op a campaign to enable frontline health professionals aware that CYP can develop arthritis, to know the main s, and to pursue early referral to speciality services. An awareness-raising campaign was developed Arthritis Research working with parents of CYP JIA, teachers, campaigners, paediatric rheumatolgists, and other interested lay and professional individuals. The campaign, called #ThinkJIA, includes postcards with key messages and a supporting website, www.thinkjia.org Resources are aimed at both the general population, to help improve recognition of the signs and symptoms and encourage early attendance at primary care health services; and at non-rheumatology frontline health professionals to support recognition of JIA symptoms and the need for prompt referral. Whilst the key messaging is common to both audiences, the language used differs to reflect the lay and medical professional expectations. Once draft campaign resources were developed, they were shared with clinical professionals and tested by parents and school teachers. Discussion/Results: Of the pilot group of parents and teachers receiving draft resources, 100% of parents and 68% of teachers agreed that they would feel confident in seeking medical attention if their child, or a child in their school, started showing signs of JIA. Following feedback from recipients in the pilot group resources have been updated with clearer imagery. These are also supported by posters for use in health clinics and general circulation. Key learning points/Conclusion: The development of the #ThinkJIA awareness-raising resources has helped ensure frontline health professionals and the general population can have access to information about JIA. This can help facilitate early referral and improved access to treatment. The broad rollout of awareness resources is essential to appropriately support CYP with JIA and ensure they receive the treatment they require promptly. Acknowledgements: Thanks to Prof Helen Foster for her vital role in the initial development of these resources, and to all those involved in the development and pilot testing. Introduction/Background: Many patients present to Paediatric Rheumatology clinic, (53%) with chronic pain related to Hypermobility. Pre-Covid, an evidenced based hypermobility class was developed and run by the Allied Health Professional team for children and young people (C & YP), and their parents/carers. These 6 classes were groupbased and included education and exercise therapy but were stopped due to the pandemic. Feedback gained was good from the class, although reported issues included reduced school attendance, accessibility due to location, parental time off work, financial and time implications of travel, and unsuitability of group interventions for CYP with social anxiety and autism disorders. Description/Method: A digital platform (Vimeo) was used to present Hypermobility education and exercise content created by the Paediatric Rheumatology team. The video aims to address these barriers, allowing more equality of access for all CYP; digital access allows CYP and parents to re-visit this information at any time, providing ongoing support for long term management of this condition. The digital platform is being developed to maximize the effectiveness of therapy resources and to improve the patients experience to promote self-management of their hypermobility.
Funding was applied for via the Transformation service. Meeting with the hospital videographer enabled the AHP team to devise a template for the video including education on what is Hypermobility, on the role of exercise -targeted versus general, the benefits of exercise, supportive footwear, pain management, pacing, sleep hygiene, and hand function advice to manage hypermobility. The class exercise programme including hand therapy was videoed using a model. The video was filmed in half a day. It was filmed using an unscripted question-and-answer format. The Paediatric Rheumatology MDT were filmed in the video. The digital platform is currently with our videography team for further edit. Further signposting to established resources will be included in the Vimeo resource. Following a final edit, this resource will be used for this patient population group. Feedback from CYP and parents, along with other health professionals is planned. Discussion/Results: On receipt of the first edit, multi-source feedback from parents/carers, CYP and other health professionals is planned via Microsoft Teams. It is hoped to show the video via Teams and seek anonymized feedback on the Teams chat function. This feedback will be discussed by the Paediatric Rheumatology MDT and will inform the final edit of the Hypermobility video resource. Further data from Vimeo analytics will be gathered e.g. how many times video watched, how long video is watched for, and what devices are being used. It is hoped that the Hypermobility Video will help support CYP and families in the long-term management and pain resulting from this condition. Key learning points/Conclusion: It is hoped that the use of new technologies and innovative ways of delivering care can enable health professionals to implement clinical support, improve self-management of chronic pain related to hypermobility, whilst improving equitable patient access to therapy across the North-West. Multi-source feedback will help inform the final edit of the video resource. Ongoing evaluation and analysis of Vimeo data will inform whether the resource is a useful adjunct in long term management of pain arising from Hypermobility. Introduction/Background: Pain is a predominant symptom that young people often present with in paediatric rheumatology clinics. There are several challenges with respect to pain communication between young people and healthcare professionals (Lee RR 2020). At a virtual Your Rheum meeting, (Your Rheum is a national young person's advisory group in rheumatology), a word cloud was developed as part of the discussion to start conversations around the development of a future pain research project. Afterwards, the young people suggested the word cloud would potentially be useful to start discussions about pain in clinic. Description/Method Aim: to determine acceptability of using a word cloud as a communication tool to prompt discussions with young people aged 11-24 years about pain in clinic. Healthcare professionals in the Barbara Ansell National Network for Adolescent Rheumatology BANNAR network were asked by Your Rheum to give out the word cloud form to consecutive young people with pain in their clinic. The following data was collected: words in the current word cloud (consisting of 35 words) which described their pain, additional words to add to the word cloud, perception regarding the usefulness of a word cloud to aid conversations about pain, using a four-point scale ranging from 'not at all' -'yes a lot'. The age and gender of each young person was also collected. The information gathered was then collated by Your Rheum members. Discussion/Results: Of 33 young people who completed the forms, 26 were female and the mean age was 15 years, range 9-22 years.
Young people selected a mean of 13/35 words from the word cloud, range 2-27 (table 1). Of the 33 young people, 14 suggested additional words (median of 2, range 1-24). Table 2 highlights additional words that could be added to the word cloud. When asked if a word cloud would help young people talk to health professionals about their pain in clinic, the majority said it yes it would (19¼yes-a lot, 8¼yes-a little, 5¼possibly, 0¼not at all 1¼missing data).
Key learning points/Conclusion: The word cloud was acceptable to the participants in this study and demonstrated potential as a communication prompt from the young person's perspective. Research is needed to determine what impact it has on pain communication between the young person and healthcare professional in the actual clinic visit. Introduction/Background: Paediatric chronic musculoskeletal pain presents a significant individual and societal burden, with an estimated prevalence of 11-38%. A large proportion of young people (YP) with chronic pain are likely to have unresolved pain which continues into adulthood and as a result require transitional care. To date, although there is guidance and transitional care research in a range of health conditions, there is limited evidence identifying the extent to which transitional care for YP with chronic pain has been developed or investigated in research. Our objective was to review the current evidence for transitional care in young people with chronic pain. Description/Method: The PEO tool was used to develop a search strategy, where the Population was "young people", the Exposure was "chronic pain" and the Outcome was "Transition to Adult Care" or variations of such words. Studies were identified by searching 4 databases: EMBASE, Medline, CINAHL and PsycINFO. Inclusion criteria were: sample population age between 10-24 years, a confirmed diagnosis of a condition characterised by chronic pain, any health care setting, any service provider, published peer reviewed, English language. Excluded were case reports, editorials, abstracts, meta-analyses, books or book chapters. Searches took place between September and December 2021.