New research highlights research priorities for young people with rheumatic disease

A national study is the first of its kind to present young people’s priorities in rheumatology research, suggesting that young people would like to see a greater focus on basic science and psychosocial research into their conditions.

Involving patients in all stages of health research is increasingly recognised as being important in making sure research is more focused on the needs of the patient. However, prioritisation of research topics is still largely driven by researchers and health professionals such as doctors and nurses and where there is patient involvement it is often representative of an older demographic.

This new research, recently published in the journal Paediatric Rheumatology, and conducted on behalf of the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR), set out to explore the research priorities of young people across the UK with rheumatic conditions. The work was funded by Arthritis Research UK via BANNAR. The work was undertaken by a group of academic researchers and Patient and Public Involvement (PPI) researchers from The Public Programmes Team, and led by Dr Janet McDonagh, Clinical Senior Lecturer in Paediatric Rheumatology, who is part of the BRC Musculoskeletal Theme.

The Public Programmes Team, a not-for-profit PPIE specialist team based at Central Manchester Hospitals, supported by members of BANNAR organised a total of 13 focus groups involving 63 11-24 years old with rheumatic conditions from across the 4 nations of the UK. The groups provided an opportunity for a wide range of young people to discuss openly what they thought about different areas of research, from basic science through to public health. They were then asked to prioritise these areas in terms of how much funding they should receive.

Discussions from across the groups highlighted that research priorities were influenced by the extent and timing of the potential impact research could have and whether participants felt that it was already a well-funded area.

Analysis showed that that basic science was a key priority and psychosocial research should be prioritised more than it currently is. Participants were particularly interested in research which explored the best ways of providing support to recently diagnosed young people.

Professor Wendy Thomson, Professor of Genetic Epidemiology and BRC Programme Lead for Childhood Arthritis, said:

“This study was the first of its kind and the findings are important in helping us develop research that is in tune to young people’s needs. It is important that young people are involved in priority setting. Going forward we’d like to better understand how young people form their opinions about research and how this is influenced.”

Research into young people’s priorities, in collaboration with BANNAR, will continue to be supported by the Musculoskeletal Theme in the BRC, which is working towards developing new treatments and disease strategies to improve outcomes for patients of all ages.