Arthritis Research UK Centre for Adolescent Rheumatology
“It is essential to get the young person’s perspective of research which is relevant to them and to include them in every stage of the research process” Professor Lucy Wedderburn, centre director
Exploring pain, fatigue, mood and illness perceptions in young adults with juvenile idiopathic arthritis (JIA)
This project was initiated due to young people continually highlighting the need for more research into psychological aspects, pain and fatigue associated with their arthritis. It was therefore designed to explore these areas to meet patients’ needs and to fill this gap.
The project was discussed with a group of young people with JIA aged 17–24. One young person stated that the project represented their arthritis very well and made them feel that someone understood exactly how they felt in their everyday life, by proposing to research these areas. Another liked that illness perceptions were being investigated as they felt acceptance and control of illness have an impact on mood, pain and fatigue.
The consent form and information sheet were reviewed by young people, who suggested changes to improve the clarity of language throughout, including clarification that interviews/ focus groups are optional and separate, stating the number of questionnaires to be completed and condensing the content of the consent form to look less intimidating.
All the suggested changes were incorporated into the current versions pre-ethical approval. The project evolved through various stages of involvement and engagement with young people with JIA.
Developing a benchmarking tool for evaluating quality of service for young people in rheumatology
A group of young people from around the country participated in one-to-one interviews and focus groups to help develop the toolkit for healthcare professionals (HCPs) to measure the quality of care in young people rheumatology since July 2015. Young people were involved in prioritising service criteria and deciding how they should be defined and measured. This allowed more relevant information to be included in the toolkit and provided more insight of why young people valued certain criteria over others, which would not have been possible to obtain from the literature alone.
The HCP toolkit was evaluated by a group of young people, who helped further shape the research by suggesting the development of an additional toolkit for young people, to help answer more subjective areas of service provision.
Next steps are for toolkit to be used to benchmark services across the UK and an Arthritis Research UK health services research grant has been leveraged to validate this toolkit