The Changing Face of Care for Children and

Young People with Arthritis

By Helen Foster, Professor of Paediatric Rheumatology, Newcastle University Honorary Consultant Paediatric Rheumatologist, Great North Children's Hospital (GNCH) Newcastle Hospitals NHS Foundation Trust.

Taken from: NRAS magazine, Autumn 2011

Over 11,000 children and young people in the UK are affected by arthritis – most have a form of Juvenile Idiopathic Arthritis (JIA) which is the commonest cause of chronic arthritis in this age group in the UK. It is often surprising to people and even to health care professionals that JIA is as common as childhood epilepsy or even diabetes. It is also surprising to many that children and young people with JIA often have difficulty in the diagnosis being made or getting access to the right treatment. Just like in adults with Rheumatoid Arthritis, it is clear that for JIA, the earlier the diagnosis is made and children receive the right care, the better the outcome is likely to be.

The British Society for Paediatric and Adolescent Rheumatology and the Arthritis and Musculoskeletal Alliance (ARMA) have produced Standards of Care for JIA that are available on line in the public domain. These Standards of Care are important for several reasons. They are based on what is regarded as best current practice and emphasise the importance of (1) early recognition of JIA  (2) referral to specialist teams for appropriate care.

We need health professionals to gain the skills and knowledge to recognise JIA

It is important to acknowledge that making a diagnosis of JIA is, with some patients, not always easy. There is no diagnostic blood test. Doctors need to think of JIA as a possibility when seeing a child with musculoskeletal problems, ask the right questions to assess the presentation and they also need to be able to examine a child’s joints properly. We know that many medical students and doctors in practice (such as GPs, paediatricians) have not been taught how to examine children’s joints and this situation needs to improve. There is an important initiative underway to make sure that all medical students and paediatricians in training in the UK are taught about JIA and taught how to assess a child with potential arthritis. Resources to help their training are now freely available at ARUK. We know that children with JIA, especially the very young, may not complain of pain but parents, relatives, teachers or others in contact with children may notice a change, sometimes subtle, in the child’s abilities (e.g. at play or doing schoolwork) or their mood. Classical features of joint swelling pain or stiffness may not always be apparent in the young child (see bullet points below for some of the more subtle presentations of JIA).

When to suspect JIA?

 •    Child has joint pain or joint swelling or observed to be limping or has a limp that comes and goes
•    The swollen joint that is not explained by trauma or infection is likely to be JIA
•    The child is stiff in the mornings or after periods of rest (e.g. long car journeys)
•    The child cannot sit cross legged on the floor
•    The child avoids activities that were previously enjoyed (e.g. playing football, painting)
•    The child appears to be able to do less than before (more tired, difficulty on stairs, clumsy walking, reluctant to walk) or the child’s mood is more irritable

Parents need to be listened to, their concerns acknowledged, the child examined carefully for evidence of joint abnormality and referral to specialist teams instigated as soon as possible. It must be remembered that children with JIA are at risk of developing uveitis (inflammation within the eye) which often has no symptoms at the start and can only be detected by a special test called a slit lamp examination performed by an experienced ophthalmologist – screening for uveitis is an important part of the management of JIA; Recognition of JIA should always mean referral for appropriate screening by ophthalmology teams. Parents who have concerns about their child need to have confidence to seek a specialist opinion. (See www.oliviasvision.org for specific uveitis information and support.)

We need health professionals to refer patients to specialist teams

Specialist teams in paediatric rheumatology have been established and are developing across the UK with marked changes in clinical care for children and young people with JIA. Parents and families need to be informed and be made aware of what to expect in terms of care for their child; the Standards of Care give this guidance.

The specialist teams include doctors, nurses and therapists trained in paediatric rheumatology. There are not enough paediatric rheumatology specialist teams in the UK and not every hospital has one – increasingly however, we are seeing clinical networks being developed that cover large areas often including several hospitals and with outreach clinics in partnership with local paediatric teams. Many paediatric rheumatology teams are linked in with Children’s Hospitals or Children’s Units and this provides access to other paediatric expertise as necessary. The aim is that wherever a family lives, the child or young person should have access to specialist paediatric orientated care. Damage to a child’s joint with JIA can occur very quickly (within a few weeks and months) and can be irreversible.

Specialist teams can offer effective treatment

The good news is that treatments available now are very effective (such as joint injections and methotrexate) but need to be given early and often at higher doses than adults. For children with severe arthritis, biologics are increasingly used. Such potent treatments may be given at home but use of these drugs requires specialist expertise and much support from nurses who work closely with families to make sure the treatment is delivered properly and safely. Access to specialist teams also brings access to the latest treatments. The newer biologics offer a major chance to children and young people with severe JIA to get their disease under control, but this must be done with close supervision by expert teams to ensure they are effective and safe. In addition, specialist teams provide opportunity to be enrolled in the latest clinical trials and clinical research as part of national and international collaborative efforts. The majority of paediatric rheumatology specialist teams in the UK are involved in clinical trials and research through the Medicines for Children Research Network / Arthritis Research UK Clinical Studies Group with strong input from parents as a “consumer voice” to determine key priorities for research in paediatric rheumatology. This is the way forward to ensure that the most relevant and important clinical research is done and new emerging treatments are monitored rigorously for their effectiveness and safety.

Delay in diagnosis and delay in access to appropriate care is still far too common

However, too often we hear about children who have been referred to hospital services but are not being managed by specialist paediatric rheumatology teams and are not getting the best treatment. How can this be so?  The answer is complex.  There is great need to educate and train hospital doctors to consider JIA earlier and refer to specialist teams promptly. Too often the diagnosis is not entertained early enough and children receive many investigations that may not be necessary or perhaps worse, children are discharged without a diagnosis at all. In other cases, children are not passed on to specialist teams.  
Development of paediatric rheumatology has lagged behind that of other paediatric specialist services in the UK; whereas it is the norm for children with epilepsy or diabetes to be managed by paediatric trained specialists rather than adult physicians, in many parts of the UK, children and young people with JIA are still managed by adult rheumatology services teams. Historically much of the care of children with JIA has been delivered very well by adult rheumatologists but with ever increasing complex treatments and the recognition that children need to be looked after by paediatric trained health care professionals (an integral part of the NHS National Service Framework for Children), adult rheumatologists are increasingly working with paediatric rheumatology colleagues to set up specialist teams and clinical networks. Adult rheumatologists are now focusing on the important task of transitional care when young people transfer from paediatric services.

We need support from professional bodies and patient support groups

The changes are gathering momentum with full support of the British Society for Rheumatology, BSPAR and NRAS. The challenge is to get the message across and make the Standards of Care the benchmark of good clinical practice. The numbers of specialist teams and clinical networks are growing and it is increasingly important that families, relatives, GPs, Trusts and Commissioners who fund services, are aware of the Standards, the need and role for specialist teams and lobby locally and regionally for access to specialist paediatric rheumatology care. For families having to come to terms with JIA, this is a stressful time and having access to a specialist team provides support and enables life at home and school to continue as normally as possible. Families are encouraged to find out about their local paediatric rheumatology specialist service (most units have websites and information leaflets), and are also encouraged to ensure that the care their child is receiving is in keeping with the Standards of Care and have confidence to question if they are not sure. This is not an easy task for families and we encourage them to talk to others about their experiences, be aware of the Standards of Care and seek further opinion as necessary.

We are living in exciting times in paediatric rheumatology

Expectations are high and for the majority of children and young people diagnosed with JIA, early access to the best treatment delivered by specialist teams equates to them being able to continue their lives as normally as possible.  We need to ensure that all health care professionals to whom children may present have the right skills and knowledge to recognize JIA early and know to refer on to specialist teams. Furthermore we need to push for changes to clinical services with more specialist teams working in clinical networks to ensure equitable access to the best care for all.