Publications

Reference:  Beesley RM (2024) Voice and Vision: Awareness and advocacy for children with arthritis - Awakening Awareness using novel and innovative approaches. ENCA Conference 2024. 

Topic: Awareness

Summary: In a well-received and dynamic presentation, Rebecca shared some of the novel and innovative approaches we have taken to raise awareness that children and young people get arthritis. This was presented at the ENCA Conference 2024, to patient organisations and charities all over the world, to share best practice and encourage others to raise awareness in their communities too.

Reference:  Beesley R, Vines G, Beesley RP (2024) POS0035-PARE PARENTS EXHIBIT A RANGE OF EMOTIONS FOLLOWING THEIR CHILD’S DIAGNOSIS OF JUVENILE IDIOPATHIC ARTHRITIS: RESULTS FROM THE JIA VIP RESEARCH PANEL. Annals of the Rheumatic Diseases Jun 2024, 83 (Suppl 1) 507; https://doi.org/10.1136/annrheumdis-2024-eular.850 

Topic: Parental experiences

Summary: We asked parents, who are part of the JIA VIP Research Panel, about the emotions they felt when their child was first diganosd with JIA. Understandably, parents experienced a range of emotions, and shared powerful terms to describe how they felt.

It is important to remember that  there is nothing you have done that has caused your child to have JIA, and nothing you could have done to prevent it. Feeling different emotions, including sadness, worry and guilt, is normal. But you are not to blame - it is not your fault. Here at Juvenile Arthritis Research we are here to support you. Visit www.jarproject.org/hope for information about the services we provide, or you can contact us.

Reference:  Beesley RP, Humphreys JH, Hyrich K (2024) POS0769 EXPLORING THE PERCEPTIONS AND EXPERIENCES OF PARENTS OF CHILDREN AND YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS – DOES ETHNICITY PLAY A ROLE? Annals of the Rheumatic Diseases Jun 2024, 83 (Suppl 1) 1161-1162; https://doi.org/10.1136/annrheumdis-2024-eular.1668 

Topic: Patient experiences

Summary: The experiences of parents of children with JIA appears to differ by ethnicity. This can have impacts on the future of treatment and care for that family.

Reference:  Beesley R, Beesley R (2024) OP0102-PARE NOVEL AND INNOVATIVE APPROACHES TO RAISING AWARENESS OF CHILDHOOD ARTHRITIS. Annals of the Rheumatic Diseases Jun 2024, 83 (Suppl 1) 6-7; https://doi.org/10.1136/annrheumdis-2024-eular.845

Topic: Awareness

Summary: Raising awareness that children and young people get arthritis is really important. It can speed up diagnosis, improve access to healthcare, and improve long-term outcomes. It also reduces stigma and isolation. This abstract, recognsed as one of the 'best of the best' at EULAR 2024 resulting in an oral presentation and formal press release, highlights just some of the innovative approaches Juvenile Arthritis Research have undertaken to raise awareness of JIA.

Reference:  Beesley RP, Beesley R, Middleton K, Mcbride A (2024) POS1442-PARE LONG-TERM OUTCOMES FOR ADULTS DIAGNOSED WITH JUVENILE IDIOPATHIC ARTHRITIS IN THE UK. Annals of the Rheumatic Diseases Jun 2024, 83 (Suppl 1) 1216-1217; https://doi.org/10.1136/annrheumdis-2024-eular.1671 

Topic: Outcomes of JIA

Summary: One of the topics we are often asked about is the long-term outcomes of having JIA. In this study of adults with JIA, we explored those outcomes amongst people who generally didn't have the same access to medications as our children with JIA do now. The majority continue to take medication for their JIA.

Reference:  Beesley R, Beesley RP (2024) AB1661-PARE THE JIA VIP RESEARCH PANEL: AN INNOVATIVE AND UNIQUE WAY TO ENGAGE WITH THE JUVENILE IDIOPATHIC ARTHRITIS COMMUNITY. Annals of the Rheumatic Diseases Jun 2024, 83 (Suppl 1) 2206; https://doi.org/10.1136/annrheumdis-2024-eular.848 

Topic: JIA VIP Research Panel

Summary: Our JIA VIP Research Panel is an innovative way for families affected by JIA to be involved in research. This abstract was presented at EULAR 2024.

Reference:  Beesley RP, Beesley RM, Middleton K, McBride A (2024) P091 Is my arthritis part of who I am or something I have? Age of onset makes a difference. Rheumatology, Volume 63, Issue Supplement_1, April 2024, keae163.132, https://doi/org/10.1093/rheumatology/keae163.132 

Topic: Identity

Summary: We asked adults with arthritis whether they felt their arthritis is part of who they are, or something they have. Older patients are more likely to feel their condition was ‘something I have’ compared to younger patients. Adults diagnosed with Juvenile Idiopathic Arthritis are more likely to feel their condition was ‘part of who I am’.

Reference:  Beesley RP, Beesley RM (2024) P097 Launching the Juvenile Idiopathic Arthritis VIP Research Panel - an innovative and unique way to engage with the Juvenile Idiopathic Arthritis community. Rheumatology, Volume 63, Issue Supplement_1, April 2024, keae163.138, https://doi.org/10.1093/rheumatology/keae163.138 

Topic: JIA VIP Research Panel

Summary: Our JIA VIP Research Panel is an innovative way for families affected by JIA to be involved in research.

Reference:  Beesley RP, Beesley RM, Middleton K, McBride A (2024) P042 The impacts of rheumatic diseases in the workplace and employment. Rheumatology, Volume 63, Issue Supplement_1, April 2024, keae163.084, https://doi.org/10.1093/rheumatology/keae163.084 

Topic: Impacts of JIA

Summary: In our study of adults with JIA, we explored the impacts of the condition on the workplace and in employment. Many adults reported impacts on multiple areas of their lives.

Reference:  Beesley RP, Beesley RM, Middleton K, McBride A, Smith EMD, Beresford MW (2024) P093 What’s in a name? Misnaming and renaming of Juvenile Idiopathic Arthritis has long-term impacts. Rheumatology, Volume 63, Issue Supplement_1, April 2024, keae163.134, https://doi.org/10.1093/rheumatology/keae163.134 

Topic: Classification of JIA

Summary: We undertook a study amongst adults with JIA, and found a large proportion have been incorrectly told their JIA becomes known as RA once they became an adult. This is not right, as a diagnosis of JIA stays as JIA for life, and this can have implications for ongoing treatment and care.

Reference:  Feilding FL, Crosby L, Earle E, Beesley R, Leslie K, MacDonald E, et al. How can trial designs better serve the needs of children and young people with juvenile idiopathic arthritis? The Lancet Rheumatology. 2024. https://doi.org/10.1016/S2665-9913(24)00026-2 

Topic: Clinical trial design

Summary: This viewpoint article outlines some of the challenges in current clinical trial designs, and how these limitations impact on children and young people with JIA. We also encourage new trial designs for emerging treatments (such as limiting the use of placebo medicines) to accelerate new drug development in JIA.

Reference:  Richard P Beesley, Rebecca M Beesley, Community awareness of childhood arthritis in the UK, Rheumatology Advances in Practice, Volume 8, Issue 1, 2024, rkad099, https://doi.org/10.1093/rap/rkad099 

Topic: Community awareness of JIA

Summary: We undertook the first ever study to measure the level of community awareness in the UK that children and young people can develop arthritis. We found that awareness that children and young people can get arthritis is low, and it is lower amongst minority ethnic groups. We know that low awareness can lead to delays in diagnosis, and that late diagnosis and treatment can lead to worse outcomes. Increasing awareness is therefore crucial.

You can read the full article here.

Reference:  Richard P Beesley, Kimme L Hyrich, Jenny H Humphreys, The incidence and prevalence of juvenile idiopathic arthritis differs between ethnic groups in England, Rheumatology, 2023; kead700, https://doi.org/10.1093/rheumatology/kead700 

Topic: Incidence and prevalence of JIA

Summary: When you visit your GP or hospital, a lot of information is recorded on an electronic database. This study used some of that data in an anonymous way (so individuals cannot be identified) to identify the number of children and young people who have been diagnosed with JIA by ethnic group. We found that the rates of diagnosis of JIA vary by ethnic group and children with White ethnicity have higher rates of JIA diagnosis than other ethnicities. We do not know why there is a difference – it could be due to a difference in biology, or access to healthcare, or a combination of both. You can read more here.

Reference:  Beesley RP, Beesley RM (2023) Raising awareness that children and young people get arthritis: Free information, resources and training for health professionals and GPs at www.ThinkJIA.org  Royal College of GPs conference 2023, Glasgow. 

Topic: Awareness

Summary: We spoke at the Royal College of GPs annual conference 2023, raising awareness that children and young people get arthritis, explaining need for referral to paediatric rheumatology, and the key signs to look out for.

Reference: Beesley RP. (2023) Mental health and JIA: Families, and how we can support them. European Paediatric Rheumatology Association, 1 October 2023, (Rotterdam). Presentation.

Topic: Mental health

Summary: We were invited to speak at the Paediatric Rheumatology Europe Society (PReS) Congress 2023. PReS is a European scientific society for healthcare professionals in the field of paediatric rheumatology. This presentation was about the need for better access to mental health support for children with JIA and the work we are doing to support children and young people.

You can watch the recording of the session here - https://www.youtube.com/watch?v=G-MtOFTiHa8 

Reference: Beesley RM. (2023) Enabing and empoweing children with RMDs in education. European Paediatric Rheumatology Association, 30 September 2023, (Rotterdam). Presentation.

Topic: Schools

Summary: We were invited to speak at the Paediatric Rheumatology Europe Society (PReS) Congress 2023. PReS is a European scientific society for healthcare professionals in the field of paediatric rheumatology. This presentation was about enabling and empowering children and young people with JIA and similar conditions at school. We included our school resources and support materials, and explained how these have been co-developed with families and professionals.

You can watch the recording here - https://www.youtube.com/watch?v=8Ar3oxCo_kM 

Reference: Livermore, P., Ainsworth, S., Beesley, R. et al. ‘The current mental health status of children and young people with JIA, and their wider family’: a charity partner collaboration survey. Pediatr Rheumatol 21, 111 (2023). https://doi.org/10.1186/s12969-023-00898-5  

Topic: Mental health

Summary: Children and young people with JIA experience substantial mental health challenges due to their condition, with significant numbers of parents/carers reporting difficulties in accessing care for their child’s mental health or their own mental health, due to their child’s diagnosis. The current 'Standards of Care' recommend that a paediatric clinical psychologist should be part of every paediatric rheumatology multidisciplinary team, but are not being universally implemented.

Reference:  Beesley RP. (2023) Patient education material in clinical care. European Paediatric Rheumatology Association, 29 September 2023, (Rotterdam). Presentation.

Topic: Patient resources

Summary: We were invited to speak to the Health Professionals group at Paediatric Rheumatology Europe Society (PReS) Congress 2023. PReS is a European scientific society for healthcare professionals in the field of paediatric rheumatology. This presentation was about how to develop patient education material (these are resources to help support families), including some top tips and examples from our own resources.

Reference:  Beesley RP, Hyrich K, Humphreys J (2023) The incidence and prevalence of Juvenile Idiopathic Arthritis differs by ethnic group in England.

Topic: Incidence and prevalence of JIA

Summary: When you visit your GP or hospital, a lot of information is recorded on an electronic database. This study used some of that data in an anonymous way (so individuals cannot be identified) to identify the number of children and young people who have been diagnosed with JIA by ethnic group. We found that the rates of diagnosis of JIA vary by ethnic group and children with White ethnicity have higher rates of JIA diagnosis than other ethnicities. We do not know why there is a difference – it could be due to a difference in biology, or access to healthcare, or a combination of both.

Reference:  Beesley RP, Beesley RM (2023) Awareness of childhood arthritis: Results from a representative online survey in the UK. 

Topic: Awareness of JIA

Summary: Low awareness that children and young people may develop arthritis (Juvenile Idiopathic Arthritis, JIA) has been identified as a risk factor for delayed diagnosis, later commencement of treatment, and worse clinical and sociological outcomes. Our study was the first to measure the level of community awareness of childhood arthritis (how many people in the community know that children can get arthritis). Awareness was low, with less than 20% being aware that young children can get arthritis.

Reference:  Beesley R, Feilding FL; CLUSTER Consortium Champions; Rosser EC, Shoop-Worrall SJW, McNeece A, Wanstall Z, Hyrich K, Wedderburn LR; CLUSTER Consortium. Development and implementation of 'A guide to PPIE-Early Integration into Research Proposals' in a multi-disciplinary consortium. Rheumatology (Oxford). 2023 Sep 14:kead482. https://doi.org/10.1093/rheumatology/kead482. Epub ahead of print. PMID: 37707533.

Topic: Patient involvement in research

Summary: Patients and parents play an important part in good-quality research projects, and we advocate for fully reimbursed and supported patient involvement in all research projects. This paper, written as part of the CLUSTER project, gives an example framework for ensuring patient voices are heard in research, with some example case studies from projects we have supported.

Reference:  Beesley RM, Beesley RP (2023) Stigma, school, and solutions: My child with JIA. AGORA presentation.

Topic: Stigma and education

Summary: We were invited to present to AGORA about stigma that affects children with JIA and their families, particularly at school. AGORA is an umbrella organisation for national and regional organisations representing patients with Rheumatic and Musculoskeletal Diseases in southern Europe.  The presentation outlined what life can be like for children with JIA, as well as the resources Juvenile Arthritis Research have available to support families.

Reference:  Beesley RM (2023) Recruitment for research: Patient perspective.

Topic: Patient involvement in research

Summary: We were invited to present to an NIHR regional meeting in the UK about the patient perspective of being involved in research. Patient involvement in research is crucial, as it gives insights and perspectives that researchers and clinicians will otherwise not hear. But effective recruitment is more than a tick-box exercise. 

Reference:  Beesley RM, Beesley RP (2023) Stigma, school, and solutions: My child with JIA. EULAR PARE presentation.

Topic: Stigma and education

Summary: We were invited to present to EULAR PARE about stigma that affects children with JIA and their families, particularly at school. PARE is the patient network associated with EULAR.  The presentation outlined what life can be like for children with JIA, as well as the resources Juvenile Arthritis Research have available to support families.

Reference:  Beesley R, Beesley R (2023) OP0160 SUPPORTING CHILDREN AND YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS IN SCHOOLS, COLLEGES AND OTHER EDUCATIONAL SETTINGS THROUGH SCHOOL TOOLKITS Annals of the Rheumatic Diseases 2023;82:106. DOI: https://doi.org/10.1136/annrheumdis-2023-eular.607 

Topic: Schools

Summary: Children and young people spend a large amount of their time in school.  Whilst most children with 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 children and young people with JIA have reported a lack of awareness and understanding, and requested resources to enable schools to support their children in school. This paper explains the development and use of our School Toolkits, which are available upon request to any school in the UK from www.jarproject.org/toolkit. Invited to present at EULAR 2023.

It was selected to be featured as a EULAR Press release, which can be found here.  

Reference:  Beesley R, Hyrich K, Humphreys J (2023) POS0745 THE INCIDENCE AND PREVALENCE OF JUVENILE IDIOPATHIC ARTHRITIS DIFFERS BETWEEN ETHNIC GROUPS IN ENGLAND Annals of the Rheumatic Diseases 2023;82:663. DOI: https://doi.org/10.1136/annrheumdis-2023-eular.482 

Topic: Incidence and prevalence of JIA

Summary: When you visit your GP or hospital, a lot of information is recorded on an electronic database. This study used some of that data in an anonymous way (so individuals cannot be identified) to identify the number of children and young people who have been diagnosed with JIA by ethnic group. We found that the rates of diagnosis of JIA vary by ethnic group and children with White ethnicity have higher rates of JIA diagnosis than other ethnicities. We do not know why there is a difference – it could be due to a difference in biology, or access to healthcare, or a combination of both.

Reference:  Shoop-Worrall SJ, Verstappen SMM, Costello W, Angevare SP, Uziel Y, Wouters C, Wulffraat N, Beesley R (2023) COVID-19-related anxiety trajectories in children, young people and adults with rheumatic diseases. Rheumatology Advances in Practice. 7(1) https://doi-org.manchester.idm.oclc.org/10.1093/rap/rkad007

Topic: COVID-19

Summary: At the start of the COVID-19 pandemic, we launched a study called the European Patient Registry. Through that we collected information from thousands of participants every week from all over the world - both parents of children with JIA and other conditions, and adults with rheumatic conditions. This study explored how people's worry about COVID-19 changed over time during the first nine months of the pandemic.

Reference:  Beesley R, Angevare S, Wilson J, Costello W (2022) A patient-led survey into the benefits and limitations of telemedicine appointments for assessing children and young people with rheumatic conditions: Comparing European and Canadian cohorts. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: COVID-19 and Telemedicine

Summary: The COVID-19 pandemic saw the introduction of telemedicine (video and telephone appointments) on a large scale. This study asked families in Europe and Canada about their experiences of telemedicine. Telemedicine appointments save time and money for families, and make appointments more accessible. Overall, parents/carers of children and young people with rheumatic conditions reported satisfaction with remote appointments. However, families continue to report the value of in-person appointments, noting concerns with telemedicine appointments, particularly remote assessment and the ability to identify changes in their child’s condition. European and Canadian respondents recognised the benefits of telemedicine, but Canadian respondents were more positive overall.

Reference:  Wilson J, Costello W, Angevare S, Beesley R (2022) A patient-led survey into the benefits and limitations of telemedicine appointments for assessing children and young people with rheumatic conditions in Canada. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: COVID-19 and Telemedicine

Summary: This analysis considered the benefits and limitations of telemedicine in Canada alone. There are advantages to telemedicine, and parents reported satisfaction with remote appointments, but they continue to report the value of in-person appointments.

Reference:  Wilson J, Costello W, Angevare S, Beesley R (2022) Parents report that healthcare professionals play an influential role in deciding whether to vaccinate against COVID-19: Results of a patient-led survey in Canada. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: COVID-19 and vaccination

Summary: Vaccination against COVID-19 started within about a year of the start of the pandemic, initially in adults and later in vulnerable children before a wider roll-out. This study explored what influenced parents in Canada to decide whether to vaccinate their children or not. Healthcare professionals and patient organisations play a key role in supporting, advising and influencing parental decision-making with regards to COVID-19 vaccination amongst children and young people with rheumatic and autoinflammatory conditions, particularly amongst parents/carers who are currently undecided whether to vaccinate or not. As vaccines become available for CYP there is a need for accurate, reliable and clear information for parents and carers to make informed decisions.

Reference:  Beesley R (2022) The importance of accurate incidence and prevalence estimates for families of children with juvenile idiopathic arthritis. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: Incidence and prevalence of JIA

Summary: Analysis in the UK provided an update to estimates of the number of children diagnosed Juvenile Idiopathic Arthritis (JIA) in the UK. We know that accurate information provides benefits in terms of policy and healthcare provision, but the views of patients and parents on the value of these figures was unknown. We conducted a small study to understand whether knowing accurate estimates of incidence and prevalence are important to patients and parents.  Overall, parents do want to know how many other children have JIA for a range of personal and societal reasons.

Reference:  Beesley R (2022) Development of a Toolkit enabling schools and colleges to confidently support children and young people with Juvenile Idiopathic Arthritis. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: Schools

Summary:  Children and young people spend a lot of their time at school, college or other educational settings. Whilst most children with 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 children and young people with JIA have reported a lack of awareness and understanding, and requested resources to enable schools to support their children in school. We co-developed our School Toolkits with parents, teachers, clinicians and health professionals for use in schools, colleges, pre-schools and other educational settings. This presentation explained how we developed the School Toolkits, and the positive impacts they have had. Schools in the UK can request a School Toolkit at www.jarproject.org/toolkit 

Reference:  Beesley R (2022) ThinkJIA: A campaign to raise awareness that children and young people get arthritis, enabling families and frontline health professionals to recognise symptoms and refer to specialist services. British Society for Rheumatology Paediatric & Adolescent Conference September 2022.

Topic: Awareness

Summary: Raising awareness that children and young people get arthritis can have a big impact - it reduces delays in diagnosis, speeds up access to treatment, and results in better outcomes for children with JIA. We co-developed the #ThinkJIA campaign with researchers, clinicians, health professionals and families. This presentation explained the background to the campaign, how it was refined and the resources available. Resources can be found at www.ThinkJIA.org