Transitioning from paediatric to adult rheumatology services – Dr Jenny Humphreys speaks to Arthritis Digest

Arthritis is usually considered a disease which a­ffects older people, so it can come as a surprise that it also impacts some children from a very young age.

Treatment for JIA may involve medication to supress the immune system, exercises to strengthen and support the joints, or regular joint injections with steroids to reduce inflammation in the joints. All of these treatments mean frequent trips to the hospital for specialist care, usually in a paediatric or paediatric rheumatology department, where they see doctors, specialist nurses, and allied health professionals such as physiotherapists, occupational therapists and pharmacists.

What happens as you get older?

Interestingly, after a few years, some children and young people with JIA may find their arthritis goes into remission (meaning they stop having the symptoms of joint pain and swelling) and no longer need these treatments. This means they do not need to keep coming to the hospital to see specialists. Research has told us certain factors make this more likely to happen. These include:

• Male gender
• Certain types of JIA, such as those that only a­ffect one or two joints
• And blood test markers, including the absence of an antibody called rheumatoid factor.

However, the number of children who go into remission is not clear, with reports* varying from anywhere between 30–65%. Currently we can’t predict when, or even if, a particular child will go into remission with any certainty, and many young people still need to attend specialist hospital services into adulthood.

Moving up

As children with JIA move into adolescence, their paediatric team will start to prepare them for the move to an adult rheumatology department.

Young people or their families may be worried about how this will happen and have lots of questions. These may range from questions about support such as:

• Will I still be able to see my old doctors and nurses?
• How do I get help for flare ups?
• Can my parents still attend appointments?

Or they may have practical questions that include:

• Where is the adult clinic?
• Who supplies my medication?

Importantly, however, it should also take into account issues that are important to the young person beyond just their JIA – for example, about their social life, hobbies, ambitions in school and beyond at work, as well as worries or difficulties in life in general, not just relating to their joints.

Studying patterns

At the Centre for Epidemiology Versus Arthritis in Manchester, JIA is a priority for our research. We aim to study patterns in disease, to be able to better understand how and why different types of arthritis occur, and what happens to people with these conditions once they are diagnosed. The work of the Centre for Epidemiology is supported by strong links to the Centre for Genetics and Genomics Versus Arthritis, who focus on the underlying genetic basis of rheumatic and musculoskeletal disease, and the National Institute for Health and Care Research Manchester Biomedical Research Centre (BRC).

Manchester BRC supports work across rheumatology (including JIA) by funding research that bridges the gap between scientific discoveries in our centres, to making real change for patients.

Recently we investigated how many young people with JIA in England transitioned from children’s to adult rheumatology services. The research was done using a database called the Clinical Practice Research Datalink, which is made up of GP and linked hospital records of approximately 15–20% of the country’s population.

We identified young people with a diagnosis of JIA using codes in their GP record, and confirmed that diagnosis by looking at their attendance at paediatric rheumatology and rheumatology hospital appointments. For those whose records went beyond the age of 18 years old, we looked at how many continued to attend specialist appointments in rheumatology departments after this age.

Interestingly, our research also showed that of those who continued to attend the hospital as an adult, one in three were then discharged or stopped attending in the following years, at an average age of 22 years old. This can inform discussions prior to that move from children’s to adult services, providing reassurance that even though they do need to still come to hospital for now, it may only need to be for a few years.

When we looked at factors determining the type of young people that continued to see hospital specialists into adulthood, we discovered it included:

• Those first diagnosed with JIA at an older age;
• Females;
• Those who also had eye disease;
• And those from less deprived areas.

However, we don’t know from our current research the reasons why other young people with JIA didn’t come to appointments in the adult rheumatology department. It may be because those young people found it harder to continue to come to the hospital due challenges in their home life, or experienced practical difficulties in attending the new department. It is a stage of life when many changes and new challenges occur, such as starting college or work, or moving out of the family home. However, it may also have been because they were in remission and didn’t need to see the rheumatologist. Future research will try to understand this better.

We are working with charity patient groups such as Versus Arthritis, and family support services to share our research findings with those who can make the most of it – helping to improve care and treatment for people with JIA.

Outlook

We want to understand more about how JIA affects people as they move into adulthood and beyond. At the Centre for Epidemiology Versus Arthritis, we plan to investigate how JIA impacts the development of other conditions such as eye disease and heart disease, any effect on pregnancy and childbearing, as well as investigating more about how young people and adults with JIA continue to use health services. This will allow us to better inform patients and families of what to expect from both their JIA and health services in the future.

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*Selvaag AM, Aulie HA, Lilleby V, Flatø B. Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis

Chhabra A, Robinson C, Houghton K, Cabral DA, Morishita K, Tucker LB, Petty RE, Larché M, Batthish M, and Guzmank J. Long-term outcomes and disease course of children with juvenile idiopathic arthritis in the ReACCh-Out cohort: a two-centre experience

Shoop-Worrall SJW, Kearsley-Fleet L, Thomson W, Verstappen SMM, Hyrich KL. How common is remission in juvenile idiopathic arthritis: A systematic review