Research: Teens are waiting longer than younger children to see a paediatric rheumatologist

Recent research conducted by Dr Stephanie Shoop-Worrall and Dr Janet McDonagh, both of the University of Manchester, found that teenagers and older children are waiting longer to see a paediatric rheumatologist than younger children. Together with the CLUSTER Champions patient representatives, they have released a joint statement to Healio Rheumatology about their findings.

What prompted this study?

This study was prompted by anecdotal evidence that adolescents with Juvenile Idiopathic Arthritis (JIA) are seen later in disease than their younger peers at paediatric rheumatology clinics, potentially due to mis-interpreting signs of JIA as normal developmental processes like ‘growing pains’ and adolescent fatigue.

What did the study find?

This study showed the longest delay appears to be between onset of symptoms and final referral to paediatric rheumatology, and while waiting list times could be improved, this highlights opportunities to shorten time to both seeking care and then early referral to the correct services. This means adolescents should be encouraged to seek healthcare early if they are experiencing symptoms such as joint pain or fatigue, with greater education needed for teachers to identify and support students who appear to be falling behind in any way. For primary care physicians, greater training on adolescent medicine in general, as well as adolescent rheumatology specifically, is needed, and should extend to professionals working in other specialties such as emergency medicine and orthopaedics.

What are the key messages from the study?

Adolescents with JIA in the UK took approximately 7 months longer than their younger peers to reach paediatric rheumatology from symptom onset. With a short window of opportunity to most effectively treat JIA early, it is more important than ever to diagnose and begin effective treatments as soon as possible for these adolescents. Importantly, these young people may have felt their symptoms were overlooked, or feel the weight of longer referral processes. Care should be taken to allow adolescents to voice and address these concerns to improve both immediate quality of life, and future confidence and engagement with healthcare in general.

Read the full article in Healio Rheumatology at

Useful links:

For primary care physicians (GPs), A&E departments and orthopaedics: Visit for information on the signs and symptoms of Juvenile Idiopathic Arthritis

For schools and teachers: Request a free School Toolkit at

If you are a child or young person with JIA find our support information at

where you can request one of our Little Box of Hope support packs. We have a version for younger children as well as a Teen pack for over 10s.