BCRD/BSPAR / For participants / Adults with JIA

Adults with JIA

Planning for a future without fear: Studying the long-term health of people with JIA.

There is currently a lack of information about what happens to children and young people with juvenile idiopathic arthritis (JIA) as they become adults. For example, we do not know:

  • How many young people will continue to have arthritis as adults?
  • How many children with JIA continued to have arthritis, or need treatment, as adults?
  • What is the impact on their quality of life, mental health, and ability to have children?
  • How often do complications of JIA and its treatment happen?

Answering these questions may reduce worries for patients and their family members. Recognising the importance of this research, Versus Arthritis is supporting the ‘Planning for a future without fear’ project to address this issue. This research aims to investigate what happens to children and young people with JIA as they become adults.

 

The research team

Lianne Kearsley-FleetLeading this research is Dr Lianne Kearsley-Fleet. Lianne has been a researcher at the University of Manchester since 2012, investigating important questions for children, young people, and adults with JIA

Joseph Rawlinson-SmithAs part of this award, our PhD student Joseph Rawlinson-Smith has joined the team.

 

Our research findings

Lianne and Joe have been investigating what happens to children and young people with JIA as they become adults. Here is a summary of their findings so far:

Death in young people with JIA is exceedingly rare

Lianne has been investigating mortality in young people with JIA in England. Death in young people with JIA is exceedingly rare; compared with the non-JIA patients there was approximately one additional death for every 2’500 years of follow-up. The mortality in patients with systemic JIA was slightly higher, and over half the deaths occurred prior to 2012 when biologic treatment, particularly for systemic JIA, was limited.

Review of previously published information

Joe has been investigating what information has already been published on outcomes in adults with JIA. This research is currently underway with results soon to follow, although the protocol has been published online:

How are those with JIA involved in this research?

Here are some of the ways that young adults with JIA, and parents of individuals with JIA, are getting involved in this research:

Part of our research team

A small number of young adults with JIA have joined our research team to contribute to the shaping of our research. We meet with them regularly to gather their insights on our research plans and ideas, drawing from their experiences with JIA. This includes aspects such as the frequency of hospital appointments and what elements of JIA they consider as crucial as the arthritis itself. Additionally, they will play a key role in interpreting and disseminating the results of our studies, and will contribute to the creation of blog posts detailing their experiences.

Joining our focus groups

Two focus groups will be formed: one consisting of young adults (aged 16 or over) with JIA, and another comprising parents of individuals with JIA. Both groups will meet once every 15 months to share opinions on our research plans and ideas based on experiences of JIA, and to help interpret and share research findings that are appropriate for those with arthritis (and their families).

Others ways

Anyone interested in proofreading content can sign up for our mailing list to occasionally receive documents for review. You can check that the content makes sense based on your own experiences with JIA. Documents may include advertisements targeting young adults with JIA and parents (or family) of individuals with JIA, or summaries of research to share with the public.

Participants will be compensated (£12.50 per commitment). Please note that this role is optional, and participants can step down at any time with no questions asked.

If you are interested in participating, please get in touch:

Blog posts

Keep up to date with news from the research team with our very own blog posts: