Planning for a future without fear: Epidemiological investigations of long-term health-related outcomes in adults with JIA

Approximately 1000 children are diagnosed with juvenile idiopathic arthritis (JIA), the most common type of childhood arthritis, in the UK annually. What happens to these individuals after 16-years old is less known.

Young adults with JIA, and parents, highlight they want more information on what to expect for the future; impact of arthritis on their lives, effect on mental health, ability to have children.

Working closely with these individuals, this fellowship will establish high-quality up-to-date important information that can educate patients and families on what to expect, empowering them to make informed decisions regarding their own disease management, and plan for their future without fear. This fellowship will address five questions: 1) How many have active arthritis/need treatment as adults with JIA?

Allows those newly diagnosed with JIA to receive accurate information regarding how likely they are to continue to have arthritis, or need long-term arthritis treatment, as adults. 2) What is the quality of life, and functional ability, of adults with JIA? Allowing children with JIA, and families, to understand how life-long arthritis may impact their future.

Alongside charities, potential provisions could help young adults manage in higher education, living away from support networks, and future careers. 3) How many JIA adults visit healthcare professionals for mental health?

Already highlighted by young people as a vital area of research, awareness of mental health impact in these individuals will generate a foundation for early interventions. 4) Does chronic arthritis influence whether JIA adults can have children?

This valuable information is vital for patients, their families, and healthcare professionals to support planning a family, enabling informed decisions on impact of arthritis/treatment in pregnancy. 5) How often do complications of JIA, and treatment, occur in adulthood?

With a better understanding of what to expect, clinicians, alongside patients, can make more educated plans for how long to stay on treatment and the risks.

Implementation of resources could help prevent vision-loss, prepare for joint-replacements, screen for cancers, all to best support an adult with chronic child-onset arthritis. The UK JIA cohort studies are rich sources of data: CAPS: newly diagnosed JIA children; >1000 now ≥16years-old. JIA Biologics Register: JIA children starting arthritis therapies; >2000 now ≥16years-old.

These will link with hospitalisation data to provide a more complete picture of what happens to these patients as adults.

The general practice (GP) database, also linked with hospitalisation data, will identify patients with JIA from routine GP visits. UK population data will be used to compare findings with the general population.

Currently, lack of information on what happens to children with JIA as they become adults is a major source of anxiety for patients and their families.

Answering these questions is essential, and by including young adults with JIA, parents, and important charities, in all research discussions, we can ensure that research findings are interpreted correctly and distributed to those who really need the information.

With these answers, future research can investigate how best to support these individuals and reduce the impact of arthritis on their lives.