Ongoing research is being done to find out the best way to treat and manage JIA. Your teenager can help with these studies by volunteering to take part in a research study.
Moving on: Perspectives of young people with arthritis, their caregivers, and health-care providers on transition.
The goal of this project is to develop a “transition tool-kit” to help teenagers prepare to move to adult care.
We are asking youth with JIA, caregivers and health-care providers what they think is important to include in the tool-kit. This may include online information modules, a detailed schedule for transition and smartphone medical self-management apps.
We expect that these tools will provide guidance for health-care providers in Canada. We also expect these tools will make it easier for youth to manage their own health and successfully move on to adult care.
Peer Support for Adolescents with Arthritis
The goal of this project was to develop the iPeer2Peer Program. The program is intended to help teens with arthritis take better care of their illness and feel more connected to other people with arthritis.
The iPeer2Peer Program matches teens with arthritis to an older mentor between 16-25 years old. This mentor has learned to properly manage their arthritis. They provide emotional and social support to the teen. Teens and their mentors connect via Skype video calls weekly for several months.
Our first study of the iPeer2Peer Program found that involvement with a peer mentor did help teens become better at taking care of their arthritis. We are now testing the iPeer2Peer Program in a large research trial across Canada.
For more information, check out: lab.research.sickkids.ca/iouch/ipeer2peer
Helping youth with arthritis and their parents to make informed and personalized decisions about pain relief treatments: Development of a new intervention
During adolescence, youth with arthritis take on more responsibility for their health decisions and management of their disease. Research has shown that it is necessary and beneficial to support youth with arthritis when making pain relief decisions. Having support can lead to better health outcomes for youth.
We are developing and evaluating an electronic decision aid and coaching tool. This tool will help teenagers with arthritis and their parents make informed decisions about pain relief treatments. We will start by reviewing research evidence to determine the best pain relief treatments to include in the tool.
Then, we work with experts, teens with JIA and their families to determine the tool’s features and content. The tool will be developed and tested by users to see if they think it’s acceptable. We will then run a study to see if the tool is feasible to use. Lastly, we will look at if the tool is effective and start testing out the tool in clinics.
CAPRI JIA Registry
The Canadian Alliance of Pediatric Rheumatology Investigators is launching a National Registry to investigate the outcomes of Juvenile Idiopathic Arthritis and the risk of medication side effects. This project has been funded by the Arthritis Society and is set to launch in 2017.
All children newly diagnosed with JIA in Canada can participate in the Registry. In the future, analysis of the Registry information will provide answers to doctors and families about the chance of important outcomes (such as remission and response to treatment) and the chance of side effects.
LEAP
LEAP (Linking Exercise, Activity, and Pathophysiology in Childhood Arthritis: A Canadian Collaborative Team) is a research study, involving 12 Canadian centres. The study looks at the relationship between JIA and physical activity.
JIA can limit a child’s/teen’s ability to participate in normal physical activities, sport and play. Low levels of physical activity during a child’s growth and development can lead to poor muscle strength. This can affect the ability of growing bones to become as strong as they need to be.
The goal of the LEAP study is to learn more about what makes it easier and what makes it more difficult for children/teens with JIA to participate in physical activities. We will examine how different levels of physical activity affect the inflammation of arthritis, while also looking at the effect that this has on developing bones and muscles.
The final aim of our research study is to develop new evidence that will support the need for increased levels of physical activity in children/teens with JIA, with the ultimate goal of improving their overall health and well-being.
Your teenager’s role in research
Research studies help the health-care team learn how to best treat JIA. By volunteering to take part in a research study, your teenager may or may not be helping their JIA. However, they will be providing new knowledge to help other children and teenagers with JIA in the future.
Your teenager will never be enrolled in a research study unless they have given “informed consent.” This means that the research team must clearly explain the study to them. Your teenager will only participate in the study if they agree to take part. If your teenager does not want to be part of the research study, then your health-care team will respect that decision. Also, if your teen is not able to or does not want to give informed consent but you want to consent on their behalf, the health-care team will respect your teenager’s decision not to participate. They won’t think poorly of your teenager, and their treatment will not be affected in any way.
There are many different kinds of research studies that you or your teenager can take part in. Your teenager might be asked to fill out a questionnaire about what it is like to live with JIA. You could be asked to complete questionnaires about what it is like raising a teenager with JIA. Other studies might involve taking new medications designed to make JIA better. Still others may involve having blood tests or X-rays.
Some research studies are done at a number of sites across Canada. In these studies, researchers across the country work closely together and consult with each other. This allows for a smaller number of research participants at each site. The data from all the sites can be combined together and further analyzed.
It is important for you to be aware of your role and your teenager’s role, in research. Your hospital may be doing studies on the best way to treat JIA in young people. If you or your teenager are asked to participate in a study, you should find out the following:
- Why is the study being done?
- What is expected of you as a participant?
- How much time is involved?
- What are the risks of being involved in this study?
- What are the benefits of being involved in this study?
To learn more information about deciding to participate in a research study, check out the link below to watch some video clips about the experiences of other children and adolescents taking part in research studies. This website was created by the National Institutes of Health, which is an American government agency that provides leadership and support for research studies.
www.nhlbi.nih.gov/health-topics/clinical-trials
To learn more about some of the research being done for Canadian children, check out the Canadian Institutes of Health Research (CIHR) website for their Human Development, Child and Youth Health Research program:
To learn more about the importance of patient engagement in research studies, check out this website from CIHR: