Patient Journey - Access to Right Care

Children with JIA often have a complex pathway to care and may present in various ways to primary or secondary care. 

Common presentations include:

• Limp.
• Functional difficulties (such as walking, handwriting, playing sport).
• Joint pain and swelling.

Very young children may not verbalise symptoms and rather than complain of pain, may present with limp, regression of milestones such as walking, ability on stairs or avoidance of activities that they previously enjoyed. Being prone to falling or 'clumsy' are clearly non-specific and may have other causes but a change in ability is important and inflammatory joint disease should be considered. 

There are many key players, in health care or school who may notice change and facilitate access to health care before a diagnosis of JIA is confirmed. Children may also present to the dentist (with jaw problems), the ophthalmologist (with uveitis and eye symptoms), hand surgeons (deformity, pain or functional limitation) and to general paediatrics (with fever, rash and joint pain). Teachers and early childhood staff (e.g., daycare or nursery workers) play an integral role in raising concerns and may notice change (handwriting, play, sport, general well-being, pain). School health may be alerted to change (well-being, fatigue, physical abilities, pain). 

If JIA is suspected, then referral to a paediatric rheumatology team for specialist assessment should NOT be delayed. Early referral to specialist teams facilitates prompt treatment and prevention of complications including joint damage, contractures, and disability.  The emergence of novel and biologic agents, as well as earlier and more aggressive treatment approaches, has dramatically changed the way that JIA has been managed over the last 10 years. Many children will do very well on treatment and will go into disease remission.

Further Information and Resources:

'Snakes and Ladders' - describing the often challenging care pathways for children with JIA and how they can be addressed.

'ThinkJIA' - a resource package to raise awareness about JIA and when to suspect the diagnosis. 

'MyJIA' - An Information booklet for children, parents, carers and schools about managing life with JIA.

The figure below was written by a young girl with JIA who is in remission with treatment.