As part of International Clinical Trials Day, we want to shine a light on a project funded by The Children’s Hospital Charity.
In 2021 Charity funding supported research into a suite of products, or toolkit, for children and young people living with Juvenile Idiopathic Arthritis (JIA). We’re really excited to say that over 80% of people that took part in the study found one or more of the prototypes really useful, so the team are now looking for funding to do a larger study!
Juvenile Idiopathic Arthritis is a long-term disease affecting approximately 15,000 young people in the UK. It causes ongoing joint inflammation, pain, and stiffness, making everyday activities difficult.
The toolkit consists of three prototypes designed to target unmet needs of children and young people with the disease. The first prototype is a wearable device that helps children to develop skills to self-manage their pain. The second prototype is a motivation tool to improve the engagement of children and young people with physio and the third prototype is a prototype to encourage discreet communication between children and their teachers.
The study was conducted with a co-design approach to enable children and young people, parents, teachers, and healthcare professionals to all work together so the prototypes were tailored to their users. Leader of the research project, Ursula Ankeny conducted online co-design sessions, in depth surveys and created activity packs to help develop the products.
Prototypes were then developed and tested in controlled environments in collaboration with the engineering department at Sheffield Hallam University.
A proof-of-concept study was then undertaken to explore how the three prototypes were used and their impact on children and young people’s independence and functionality. This involved ten participants aged seven to 16 along with their parents and teachers. They were asked to record their symptom management without the prototypes for three weeks to establish a baseline. Following this they were trained in how to use the prototypes and then were asked to use them and record their symptoms and prototype use experience for five weeks. This was followed by a further week of data collection without the prototypes. Ursula Ankeny then interviewed the parent, child and their teachers to further drill down into their experience, followed by an in-depth survey.
The results of the initial study show that 88% of the participants found one or more of the prototypes highly beneficial so the team will now look for funding to undertake a larger feasibility study.
Children and young people and their parents who took part in the study recorded their experiences along the way and they were generally positive indicating a beneficial impact.
One child said: “I felt happy that I could use something on my own to help me.”
Another said: “Lights make it fun rather than just doing boring physio exercises.”
It was also important to the study to understand the parents’ perspective with one saying about their child: “they’re now doing more physio, having previously only been doing their exercises once a year.”
A child also said: “It helped because the teacher knew I needed a movement break and I didn’t have to tell them in front of everyone.”
Charity funding helps make clinical studies like Ursula’s possible. To find out more about charity projects visit the website here: https://www.tchc.org.uk/news/
To find out more about Ursula’s work visit her Instagram @ursula_ankeny and twitter @ursulaankeny.