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Why is a national centre for children, like the UK’s Experimental Arthritis Treatment Centre for Children (EATC4Children), so important for those children and young people living with conditions such as lupus, arthritis and other associated musculoskeletal conditions?
It is important to bring together people with a lot of passion, specialist knowledge and expertise about these conditions to work collaboratively and improve things. A national centre is needed to raise awareness of the importance of research into these conditions in young people, as well as acting as a hub to share learning between centres across the country.
The voice of children and young people, and their families, have been the strongest and loudest champions of the EATC4Children since its conception. How important is the voice of children, young people and parents to the forward research strategy of Lupus UK in improving their care and the understanding of the conditions affecting them?
LUPUS UK has always been guided by individuals and families who are personally affected by lupus. This is fundamental to how we work because we must understand their needs and priorities to have the greatest positive impact. The UK JSLE Cohort [Study and Repository] has done excellent work with young people and families to discuss their priorities for research. We look forward to having more opportunities to engage with these groups when we employ a Young People & Family Support Officer in 2023.
Lupus UK funds Specialist Lupus Nurses throughout the UK, most recently at the UK's first ever Centre of Excellence for Childhood Lupus based at Alder Hey Children’s Hospital in Liverpool. What are the benefits of these specialist roles and how do they help to provide much needed care and support to people with lupus and their families?
One of the most important roles of a Specialist Lupus Nurse is to act as a dedicated contact point for patients and their families. Lupus impacts many parts of a person’s life and can therefore generate a lot of questions and needs for support. A Specialist Lupus Nurse can help with signposting to appropriate support between appointments with the consultant and can help with issues such as medication side-effects, new symptoms or discussing support with a school or workplace. The Specialist Lupus Nurse has more time to listen to questions from patients and their families and assist with education and information.
Lupus UK hosts parents’ meetings every few months as a space for families to engage and interact with clinical teams from across the UK. How important is it that these kinds of spaces are available for the families to have time with clinical teams in an informal setting, and to be able to connect with each other?
The amount of interest in these virtual meet-ups has exceeded our expectations, showing there is a significant unmet need for more education and peer-support of parents and carers who have children with lupus. I think it can be difficult for some people to know whether a question they have for their child’s clinicians is valid. There are concerns about wasting their time or being a nuisance, especially when we know that NHS services are under significant pressure. These sessions provide dedicated space and time to discuss questions which may not seem a priority during the limited time available in consultant appointments. They can also provide time for parents and carers to reflect on their own wellbeing, which is not a priority at their child’s appointments. I hope that the sessions provide some reassurance to those who attend and help reduce any sense of isolation.
The EATC4Children is unique in being the only national EATC specifically for children and young people. What are the important gaps in the translational pathway from bench to bedside and back again that Lupus UK sees the EATC4Children fills?
It is important for us to understand how these conditions may differ in children compared to adults. If we can understand childhood-onset lupus better, we can make use of precision treatment approaches so that patients are provided the treatment option that is most likely to help them at the point of diagnosis; reducing delays in getting the disease under control so that damage accumulation is minimised as well as limiting the impact on development, education and quality of life.
How do you envisage LUPUS UK can work with the EATC4Children to increase support for children and young people with lupus and their families?
LUPUS UK can help to ensure the views and experiences of children with lupus and their families are heard and considered at all stages of research. We can work closely with the EATC4Children team to recruit volunteer patients to be part of their projects.
LUPUS UK is a research funding organisation, prioritising pilot and observational studies to provide proof of concepts for larger funders. We hope that our research grants can be used to test novel hypotheses and methodologies so that research groups like the team at EATC4Children can secure much larger grants from other organisations and continue their vital work.
How important is the relationship and the close collaborations that Lupus UK and the EATC4Children already have together? What is your vision for how this can grow even more in the future?
We have a strong relationship, partly due to our shared value of keeping the priorities, views and experiences of patients at the centre of our work. Together, we can provide more opportunities for young people with lupus to shape and contribute to research projects, empowering them as well as improving the quality of the research. I hope that together in the future we can demystify lupus research for a lot more young people and engage even more of the patient community.
The UK JSLE Cohort Study and Repository has been a long-standing initiative, led by the team in Liverpool and the EATC4Children for over 16 years, that Lupus UK have been very involved in throughout. This longitudinal collection of clinical data from over 20 centres across the UK, with associated biosamples, has been an enormous resource and led to major advances in the improving the care and wellbeing of children and young people with lupus across the UK and the world. How does Lupus UK see its continued support for this going forward, and what would be the key goals to achieve over the next 10 years?
The UK JSLE Cohort Study and Repository is a remarkable resource for researchers. The longitudinal data is exceptionally important for us to better understand the factors involved in long-term outcomes from childhood-onset lupus. I hope that over the next 10 years data like this can be used to adapt how we approach the treatment of childhood-onset lupus. It would be great to see newly developed therapies being used earlier to control disease activity, reduce damage accumulation and limit the burden of corticosteroids.
The UK’s EATC4Children addresses the needs of children with both lupus but also other paediatric rheumatic and musculoskeletal disorders. How important is this interdisciplinary work to Lupus UK, which includes collaborative working across multiple disease-specific charities?
It is important to acknowledge the overlaps and commonalities between the various paediatric rheumatic and musculoskeletal disorders to help improve quick and accurate diagnosis and treatment. We may even learn of shared disease mechanisms which could prompt the repurposing of treatments to a different patient group, widening the range of options available to clinicians. This is especially important in rare diseases which have fewer treatment options available.
From the perspective of LUPUS UK, what would be the key highlights of the EATC4Children and what would be the most important goals for us to achieve over the next 5 years?
A key highlight of the EATC4Children is the way it brings together researchers, clinicians and patients from across the country to collaborate. Childhood-onset lupus is rare and that means collaboration between centres is essential to collect significant numbers of patients and samples for research purposes. In addition, the patient-centric approach has ensured the priorities of young people living with lupus are heard and incorporated into the strategic approach. Over the next 5 years I hope we can make use of newly developed therapies for lupus and understand how they can be used most effectively in the treatment of childhood-onset lupus.
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