Why diagnosis is often delayed in JIA

Joint pains in children are common and both parents and doctors often refer to these as growing pains. Growing pains are relatively common and 16% of school age children have suffered from growing pains at some point in their life.

Growing pains usually occur in younger children and are equally common in girls and boys. They are characterised by aches and pains and often occur in the lower limbs, usually the calves.  There is usually no swelling or bruising. The pains typically occur at night and can disturb the child and indeed, the whole household for nights on end and as a result parents are usually at the end of their tether by the time they go to see the GP.

JIA is hard to diagnose because it can present as growing pains or other diseases, such as viral illnesses, infections and trauma.  All these conditions can present with joint pains and/or swelling as well.  In small children, trauma is common and GPs see many children who have had tumbles and trips and have a painful limb or joint.   Persisting pains may be the first signs of an inflammatory arthritis, but it can be common for both parents and doctors to assume the pain is due to the injury and delay the diagnosis inadvertently.

Many children, particularly the very young, may not be able to describe what’s wrong or where it hurts and so may start to limp or revert to crawling to take the weight off the affected joints.  They may also show signs of regression in their use of the potty because getting on and off the potty is difficult if their joints are swollen and sore.  Thus, they may stop using the potty and may after many weeks or months of being dry suddenly start to wet themselves.  If the child is 2 years old for example, this is often put down to the ‘terrible 2s’ when in fact, it is because of having JIA.

Older children can of course express the problem and describe the site of the pain, but may not realize it is significant and hence put up with symptoms for a long time before presenting.  Teenagers often have difficulty communicating with their parents or carers and so may also delay discussing a joint pain or swelling.

Common things occur commonly, so any condition presenting to a GP is much more likely to be due to a common disorder and doctors in training are taught this.  This can also lead to inadvertent delays.  There may be very subtle features which distinguish this presentation from a common disorder, such as minimal joint swelling, which the GP does not have the expertise to detect.  Children’s limbs are often quite chubby and this can hide any signs of joint swelling.

The average GP will probably see one or two children every year with growing pains and it can be impossible to tell the difference between growing pains and JIA in the initial phases.  Add this to the fact that the average GP may only have two weeks training in Rheumatology in the whole of their 5 year GP training scheme and it is easy to see that GPs may be unskilled in recognizing and managing inflammatory arthritis.

The overall prevalence of JIA is estimated to be 1-2 per 1,000 children with an incidence of 1 per 10,000.  This means overall, 1-2 children in a population of 1,000 children have JIA and that each year one child in every 10,000 children will be diagnosed with JIA.  JIA is more common in females and although children who have JIA live all over the UK the numbers can vary widely in any one area.  What all this means is, JIA is an incredibly rare condition and as a result it will probably take the average GP about 5-10 years before they see one new case of JIA in their practice.  This graph for example shows that, in an average week in a typical GP practice in Leek Staffordshire only 47 patients, out of over 350 consultations, saw their GP because of a musculoskeletal problem. However, those seeing their GP because of inflammatory arthritis (such as rheumatoid arthritis and juvenile idiopathic arthritis) was so small it didn't show up on the graph!

GPs will probably suggest simple pain relief medications in the first place for any joint or musculoskeletal ache and pain and the parents may well try treatment with paracetamol or an anti-inflammatory drug, such as ibuprofen, before taking their child to see the GP.

GPs will always try to reassure parents rather than cause anxiety by suggesting their child may have arthritis when really there are no signs of this.  However, once the GP has decided to refer a child, the commonest place to refer to is a paediatric clinic.  The general paediatrician can then rule out other common causes of joint pain. If he or she suspects inflammatory arthritis then a referral to a paediatric rheumatologist will be made.

In some areas, GPs will be able to refer directly to a Paediatric Rheumatologist but they are in short supply and there is usually a triage system through general paediatrics first.

It would be unusual for a GP to refer a small child to a physiotherapist, but sometimes, adolescents will be referred for physiotherapy for their back or joint pains.  Physiotherapists may refer directly to the Paediatric Rheumatologist if they suspect an inflammatory condition but can also suggest the GP does the referral, if this direct pathway is not available.

Tips for parents

  1. JIA is an incredibly rare condition and many GPs have little or no experience of seeing or treating a child with JIA
  2. very young children may not be able to say what or where it hurts and so revert to crawling or may start to limp to take the weight off their affected joints
  3. young children may also show signs of regression in their use of the potty and start to wet themselves again
  4. older children may not realize the significance of their pain and so put up with symptoms for a long time
  5. persisting pains may be the first sign of inflammatory arthritis.

If you think there is something wrong with your child, there could be.  Trust your instincts and remember:

Persistent:  return to your GP and re-raise your concerns

Referral:     ask for a referral to the appropriate locally available specialist

Research:    if you use the internet or other sources to look for information about what might be wrong with your child take this information with you when you go to see your GP so you can discuss these.

References available on request 

By Dr Louise Warburton (General Practitioner)
Original article: 08/01/2015
Reviewed: N/A
Next review due: 08/01/2018