The IMPACT study
Dr Polly Livermore
The IMPACT Study, led by Dr. Polly Livermore NIHR ACAF Nursing Fellow, Honorary Associate Professor at University College London (UCL) and a team of researchers at Great Ormond Street Children’s Hospital (GOSH) including Klaudia Kupiec, have developed ‘Rheumbot’ a chatbot intervention to help families navigate the challenges of living with a chronic paediatric rheumatological condition. Co-designed with children, young people and their parents, the chatbot offers instant, at-home information and well-being support, bridging the gap between hospital visits and everyday life.
Paediatric Rheumatology is a term that covers over 80 conditions which affect different parts of the body. Juvenile Idiopathic Arthritis (JIA), which causes inflammation and swelling in the joints is the most common paediatric rheumatological condition. However, the majority are much rarer, like the Fever Syndrome ‘CAPS’, which is approximated to affect 20-40 children in the UK.
Due to the rarity of many of these conditions, parents often struggle to find accessible, relevant and current information to help them manage their child’s condition. By providing families with this guidance, the aim is to ensure that support is available whenever they need it, not just during hospital appointments. Moreover, having access to trusted information is vital in order to help families understand the condition, manage treatments, and frequent hospital visits, recognise flares, manage schooling, prepare for the future by being better informed and to not feel so isolated and alone.
The IMPACT study’s ‘Rheumbot’ is unique with certain key features and is now live for parental testing. One parent told us “It is a fantastic mixture of medical answers and practical tips to help manage your child’s condition. Gives you some ‘control’ as a parent when so much is unknown and uncertain”.
Our Steering Group is made up of 12 children, young people, parents and healthcare professionals and has been instrumental in helping shape and direct the study. For example, Steering Group members co-led on focus groups, ran their own stations at our workshop, helped analyse the data and one young adult presented on this work at a Health Professional Conference with us last year in Gothenburg, Sweden. It is this involvement from such a fabulous group of expert children, young people and parents that led to our amazing Inaugural Early Career Researcher PPIE award from the fabulous Rare Disease Research UK and Genetic Alliance UK. One father and his daughter have been particularly pivotal and supported the study from initial research conception to current day; Nathanael Bourns and Kaya, both of whom attended the Rare Disease Research UK conference in Manchester (March 2025) to collect the award with Klaudia. These photos show some of their involvement at our workshop event in London in May 2024.
We have so far recruited an amazing 300 children, young people, parents and healthcare professionals UK wide, and their engagement, support and enthusiasm has been invaluable – with these numbers being much higher than initially anticipated!
We are still looking for more parents and young people to take part in this important research, including siblings of those affected with paediatric rheumatological conditions. Thank you everyone for your support so far.