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 JIA as they transition to adulthood. 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.

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:

Joining our research team

A small number of young adults with JIA will be joining our research team to contribute to the shaping of our research.

We will meet with them regularly over a six-year period 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).

How you can get involved

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:

Lead researcher

Lianne Kearsley-FleetLianne Kearsley-Fleet is a researcher at The University of Manchester. For the past 11 years, Lianne has been researching important questions for children and young people with juvenile idiopathic arthritis (JIA). She has recently been awarded a Versus Arthritis Career Development Fellowship to investigate what happens to children and young people with JIA as they transition to adulthood.