When there is more to cope with than the disease

This session was definitely one of our conference highlights! Natalie Billiard founded Zoe's Angels in Australia to provide support and information to families with JIA having found gaps in provision there - just as we founded Juvenile Arthritis Research to fill gaps here in the UK. Natalie's presentation was her incredibly powerful personal story. She spoke about what life is like for the family of a child with JIA, and her experiences resonated with us and other patients and parents in the audience.

In the same session, Aimee Hildenbrand (USA) spoke about the effects of medical trauma on children with chronic conditions, including how stressful hospital visits and diagnostic processes can cause emotional and psychological stress for some children.

Marilène Strijbos then spoke about the additional complexities of treating children with autistic spectrum condition (ASC, also called autism). Children with ASC struggle with social communication, which makes it difficult for them to explain the pain and discomfort they are feeling due to their JIA. They often also experience pain differently to other people. Being aware of that can help in their treatment.

Overall, the key advice in this session for clinicians was to listen to patients and families - something we strongly support, which is why we are patient partners in a number of national and international research and support projects.

The highlights of patient organisations

Every patient organisation that is part of ENCA was invited to provide a short video showcasing their highlights. Alongside our own video in which we crammed a selection of the support resources we have available for families, were examples from a number of other countries, showing some of the great awareness-raising work they have been doing.

You can watch our video here.

Global Task Force

The musculoskeletal Global Task Force is headed by Helen Foster (UK) and Chris Scott (South Africa) and is a truly international collaboration with a shared vision to raise awareness and improve access to the right care for children with musculoskeletal conditions. They also work to bring training and support materials to clinicians and communities who need them, particularly in low and middle income countries where paediatric rheumatology is often not recognised at all. We have worked with Helen and the Task Force for several years, are proud of what they do, and are looking forward to continuing to work with them into the future.

Patient-clinician partnerships: optimising patient outcomes

Another of our favourite sessions, this time with Karen Durrant of the Autoinflammatory Alliance and Wendy Costello of iCAN Ireland and ENCA. Both spoke passionately about their experiences as parents of children with chronic conditions, and how they founded and built their organisations to provide support to other families and to make a real change, and how they partner with clinicians, health professionals and researchers to represent families and to make change a reality.

Debajit Sen, a clinician from University College London, spoke about partnering with patients and parents and how valuable it is. As he put it, "it's crazy and incomprehensible" to not involve patients and parents in research and treatment. Thank you for speaking up for the vital role of patients, parents and patient organisations in research and clinical practice.

Digital Health Technologies

Three speakers presented about digital health technologies and how they can affect and influence patient care.

First was Jonathan Hausmann talking about the use of social media to support patients, as well as its role in research. A huge 98% of parents of children with JIA use social media to find out more about the condition and to get support, and research shows that social media use increases amongst young people with some chronic conditions when they flare. But there are dangers on social media - misinformation, misunderstanding, poor and dangerous advice. We recommend being very careful with advice you read online, and if in doubt speak to your child's rheumatologist.

Next was Simon Stones, outlining some of the resources available for families. Our Family Support resources can be found here.

Kristen Hayward then spoke about the development of 'virtual' pGALS. pGALS is how clinicians to assess your child for JIA and other conditions - it's what they are doing when they ask your child to bend and flex, pull against their hands and feel the joints for tenderness or swelling. As the use of telemedicine increases, there is a need for families to help with this assessment, because the doctor cannot move your joints down a video call. And that is where virtual pGALS comes in.

Uveitis

Another incredible session was with Catherine Wright sharing her personal story about growing up with uveitis due to her JIA. Uveitis (inflammation inside the eye) is often not painful and shows no symptoms for many children. It's very important to have regular eye checks to monitor for the condition.

Rare diseases and the implications for health professional's management

Quite possibly one of the best sessions at PReS this year, headed by three young people with rare autoinflammatory conditions. Luca Rapisarda, Luc Angevare and Jasmijn Groenewegen spoke about their experiences and what they wanted clinicians to know. Their key theme was the need to listen to patients, to believe them, and to support them:

"Whether I like it or not, hospital is part of my life"

"Patients aren't data, they're real people with real stories."

"Most children with chronic diseases try to downplay their symptoms, not exaggerate them."

Research for and with patients

Eilean Macdonald, who is also a CLUSTER Champion, spoke about her experience of being involved with research. Eilean is a young adult with JIA, and explained how "Often patients haven't been told what their data is used for in research," but how that is changing with projects such as CLUSTER, where patients are seen as partners throughout the journey.

Eilean explained that inclusive teams make better decisions, faster, with fewer meetings and with better outcomes. The same applies when including patients in the decision-making process and involving them in research.

One of our most-shared messages during PReS this year was from Eilean: "Doctors have years of training... but so do patients. They have lived experience and see things differently. Working together makes us stronger and more effective."

Eilean was followed by Liz Jury from UCL, who gave a quick introduction to machine learning and how it contributes to personalised medicine. Finding the most effective medicine for each patient without the need for trial-and-error is a hope for patients with JIA.

Finally in this section was Anton Gruss from Kourir in France talking about the involvement of his patient association in research.

Closing

In the final few hours of PReS 2021 we joined the ENCA Roundtable discussion, where we spoke about plans for the coming year. We heard from ERN RITA, a European programme involved in improving patient care, and then the final closing ceremony.

Final remarks

One of the recurring themes throughout PReS 2021 has been that parent-led, volunteer-run organisations run by their founders are powerful, passionate and making a big difference, especially those founded in recent years. From Australia, South Africa, USA, Ireland and us in the UK, these have all been formed to fill a gap and are making a big difference to the families they support. We are proud to be part of the growing network and looking forward to working with them more in the future.

One of the unique things about PReS is the involvement of patient organisations, patients, and young people in key sessions. It helps make things real, backed-up with powerful stories of our experiences. At the same time patients see things from the clinical and scientific perspective. We learn from each other, benefit from working together, and can bring change for children and families affected by rheumatic diseases such as JIA. So much has been achieved, but more work is needed. Working together - patient organisations, clinicians, health professionals from different backgrounds, different disciplines and different countries - we can bring change and bring hope.