Treating Children With Arthritis According to Their Individual Probability of Outcomes and Response to Treatments

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Interventional
Study Phase: Not Applicable
SUMMARY

The PERSON-JIA Trial is a cluster-randomized trial testing the use of Shared Decision Making (SDM) with families for treatment of children with arthritis. The intervention is a discussion between physicians and families at the time of diagnosis that uses computer-generated personalized outcome reports generated by previously developed prediction algorithms. By using information provided by thousands of families, the investigators have developed a way of providing answers to common questions asked by patients and their families at diagnosis. We will test whether a structured discussion and shared decision between families and doctors (guided by the patient's personal report) will improve the tailoring of treatment to the child and control of their disease. The personal report is called the PERSON-JIA report and presents the child's expected disease severity, the likelihood the child will be arthritis free by age 18 and the chance treatments will be effective and/or have side effects. This way, answers to these questions can be shared by physicians and families to weigh potential benefits and harms according to family values and preferences. The investigators expect that using the personalized report in a frank and thoughtful discussion will help physicians and families make better decisions about managing the child's disease. This in turn will result in better disease control, greater family engagement and satisfaction with care and better-tailored treatment. If so, this will be a ground-breaking way of using information provided by families and doctors to improve the care provided to and the outcomes of children with arthritis in Canada.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 1
Maximum Age: 18
Healthy Volunteers: f
View:

• Licensed to practice pediatric rheumatology in Canada;

• Providing care for children with JIA at least once a month;

• Consent to be randomized and to implement the SDM intervention for the duration of the trial, if randomized to the intervention arm;

• Commit to propose enrollment in the Registry to all their newly diagnosed patients with JIA during the trial.

• Consent to include their information in the CAPRI JIA Registry;

• Consent to the PERSON-JIA trial and answering additional questionnaires to assess decision making;

• Allow recording of their medical encounter (if selected at random);

• JIA fulfilling International League of Associations for Rheumatology (ILAR) criteria;

• Newly diagnosed (within the last month);

• Diagnosed by a pediatric rheumatologist participating in the PERSON-JIA study;

• Not yet receiving treatment, or received only Non-Steroidal Anti-Inflammatory Drugs (NSAIDS) or joint injections;

Locations
Other Locations
Canada
BC Children's Hospital
RECRUITING
Vancouver
Contact Information
Primary
Jaime Guzman
jguzman@cw.bc.ca
604 875 2000
Time Frame
Start Date: 2023-05-23
Estimated Completion Date: 2029-02
Participants
Target number of participants: 842
Treatments
No_intervention: Current Best Practice
Physicians randomized to this arm will provide current care and treatment decisions with patients will be made in accordance with current best practices. Will not engage in structured shared decision making (SDM) discussion and will not have access to PERSON-JIA Reports.~Patients will be consented to enroll in the CAPRI Registry at the clinic visit when they are diagnosed. Registry enrollment will allow collection and input of clinical data into the Registry.~Clinic visit and discussion will remain unchanged for physicians, patients and their families. Questionnaires will be collected at enrollment, at the second visit and a 6-month and 12-month follow-up visits.
Experimental: Shared Decision Making (SDM)
Physicians will use the PERSON-JIA Report to guide discussions with the newly diagnosed patient and family. The intervention will not dictate the use of specific medications or treatment strategies, only facilitate better informed treatment choices according to patient circumstances.~The intervention is a structured SDM discussion between physician and family, occurring at the time of the child's JIA diagnosis. Discussion is guided by the PERSON-JIA Report, which is generated in real time, on the physician's smart phone.~Patients newly-diagnosed with JIA will be consented to both enrollment in the CAPRI Registry and enrollment in the PERSON-JIA trial.~Clinic visit and discussion between the physician, patient and family will be facilitated by the PERSON-JIA report to support a shared decision making process. Questionnaires will be collected at enrollment, at the second visit and at 6-month and 12-month follow-up visits.
Sponsors
Collaborators: Canadian Institutes of Health Research (CIHR), The Arthritis Society, Canada
Leads: University of British Columbia

This content was sourced from clinicaltrials.gov