Developing the Juvenile Idiopathic Arthritis Toolbox
Juvenile Idiopathic Arthritis (JIA) is a long-term rheumatic disease that affects approximately 15,000 children and young people (CYP) in the UK. JIA causes chronic joint inflammation, pain, and stiffness, and often makes everyday activities difficult. Although some products exist to support CYP with JIA, most have not been designed with input from CYP and are therefore not fit for purpose.
The JIA Toolbox originates from an earlier co-design project led by Ursula Ankney, a Design Researcher at Sheffield Hallam University. This user-centred project collaborated with CYP with JIA and identified four clear unmet needs:
- Self-management of pain
- Physiotherapy engagement
- Communication with stakeholders
- Symptom recording
A prototype device was developed and tested for each unmet need, together creating the JIA Toolbox.
This project is currently evaluating the effectiveness of the prototypes in helping CYP with JIA. This proof-of-concept phase has involved has included further co-design workshops with different stakeholders involved in JIA management and further development of the prototypes to ensure they are easy to use. The next body of work will involve CYP using the prototypes, with the data being analysed to assess the extent to which the prototypes have been of benefit.
STAGE OF DEVELOPMENT BEFORE WORKING WITH NIHR CYP MEDTECH
SUPPORT PROVIDED BY NIHR CYP MEDTECH
NIHR CYP MedTech facilitated an introduction between Ursula Ankeny and the rheumatology clinical team at Sheffield Children’s NHS Foundation Trust.
NIHR CYP MedTech supported the project team by identifying relevant funding calls and co-authoring the grant applications.
NIHR CYP MedTech are providing day-to-day management of the project and supporting networking within the MedTech sector.
This project is currently focusing on validating the prototypes with CYP and clinical teams before evaluating the devices in a more extensive clinical research study.
JIA Toolbox has been co-designed with CYP, parents/guardians, clinical teams, and teachers to ensure that it meets key stakeholder needs. JIA Toolbox has the potential to significantly improve CYP’s pain self-management skills, increase their engagement with physical activity, improve communication with stakeholders, and embed positive health behaviours at a younger age. Together, these products have the potential to empower and equip CYP to improve their independence, confidence, and functional ability.
This project was awarded funding by NIHR CYP MedTech in October 2019 to further develop the products. The project was awarded further funding from The Children’s Hospital Charity in October 2021 to carry out the proof-of-concept study.
Last updated: 18 May 2022