DEVELOPMENT OF A WEB APPLICATION TO HELP TEENS WITH JUVENILE ARTHRITIS AND THEIR CAREGIVERS MAKE INFORMED AND PERSONALIZED DECISIONS ABOUT PAIN MANAGEMENT OPTIONS

Leader(s): Karine Toupin April (PI)
Institution(s):
children's Hospital of Eastern Ontario Research Institute, University of Ottawa
Other Members: Stinson J, Huber AM, Couchman D, Ragusa M, Sachs H, Sivakumar A, Gaboury I, Duffy CM, Morgan E, Brosseau L, Li LC, Brinkman W, Bisch M, Cohen J, Stringer E, Légaré F, Proulx L, Sirois A, Junkin L, Cavallo S, Fortin PR, Tugwell P

An intervention to help teens with Juvenile Idiopathic Arthritis, and their parents, become informed about pain management options, make decisions that match with what is important to them, and be engaged in their own care.



Why was the study done?

Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of chronic musculoskeletal pain in youth, and can negatively impact all aspects of quality of life. Youth living with JIA can try many approaches to manage their pain, including medications and physical or psychological treatments. Choosing among these treatments can be difficult for families. Research also suggests that health care providers do not always provide youth with JIA and their families with the information they need on a wide range of treatment options relating to pain, nor discuss families’ treatment preferences in depth.


How was the study done?

Our team developed the JIA Option Map, a web application that provides information on a wide range of treatments to manage JIA pain based on youth and parents’ preferences. We are now testing the JIA Option Map together with an online discussion with a health care provider, among 20 teenagers aged 13 to 18 years and one parent of each. We are evaluating whether this approach is acceptable, easy to use and useful over a 3-month period.


What were the study results?

As a result of this research program, teenagers with arthritis and their parents will have access to reliable evidence-based information on a variety of treatments to manage pain, and support to make personalized decisions throughout the course of the disease. It may help teenagers become more engaged in their care, follow the chosen treatments, better manage their disease, and lead to better health outcomes. In the future, we will run a larger study to determine the impact of the tool on decision-making and health outcomes.



Was a patient-partner involved with your study?

Four patient partners, including young adults living with JIA and parents of youth with JIA, have been involved in our study from the beginning. In particular, one is in charge of publicizing results of the project. This partnership had an impact on all steps of this research project, such as designing the JIA Option Map, simplifying wording for youth and families, and communicating the study results to policy-makers and patients. Clinicians from more than 7 professions have also contributed to the development of the JIA Option Map.



Recent Updates:
This project was scheduled to present at the 2020 Pediatric Rheumatology Symposium, originally scheduled for April 29 - May 2, however was postponed due to COVID-19. Click here to view the original abstract submitted entitled: Acceptability and Usability Testing of a Preliminary Version of the JIA Option Map, an Electronic Decision Aid for Pain Management Options in Juvenile Idiopathic Arthritis
Last updated: August 2020


Selected Publications:
  • K. Toupin April, A.M. Huber, C.M. Duffy, D. Couchman, L. Proulx, E.M. Morgan, F. Berbatovci, A. Boyd, H. Sachs, A. Sirois, J. Cohen, M. Bisch, A. Sivakumar, M. Ragusa, T. El Hindi, I. Gaboury, L.C. Li, E. Stringer, S. Cavallo, E. Ueffing, M. Gibbon, P.R. Fortin, W. Brinkman, M. Connelly, J.E. Weiss, S. Gmuca, S. Décary, P. Tugwell, J. Stinson. Development and acceptability of a patient decision aid for pain management in juvenile idiopathic arthritis: the JIA Option Map. The Patient.

 

  • M. Parry, A.K. Bjørnnes, K. Toupin April, A. Najam, D. Wells, A. Sivakumar, D.P. Richards, T. Ceroni, M. Park, A.K. Ellis, I. Gilron, S. Marlin. Improving Clinical Trials through Patientā€Oriented Research. The Patient. (this project stemmed from collaborations with Monica Parry and Ian Gilron because of our involvement in CPN)