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Personalized Estimates of Response and Severity Outcomes in Newly-diagnosed JIA

Juvenile Idiopathic Arthritis

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.

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Conditions de participation

  • Sexe:

    ALL

  • Âges admissibles:

    1 to 18

Critères de participation

Physicians (Inclusion):

1. Licensed to practice pediatric rheumatology in Canada;
2. Providing care for children with JIA at least once a month;
3. Consent to be randomized and to implement the SDM intervention for the duration of the trial, if randomized to the intervention arm;
4. Commit to propose enrollment in the Registry to all their newly diagnosed patients with JIA during the trial.

Physicians (Exclusion):

1. Fellows-in-training;
2. Physicians planning to retire within 2 years.

Patient (Inclusion):

1. Consent to include their information in the CAPRI JIA Registry;
2. Consent to the PERSON-JIA trial and answering additional questionnaires to assess decision making;
3. Allow recording of their medical encounter (if selected at random);
4. JIA fulfilling International League of Associations for Rheumatology (ILAR) criteria;
5. Newly diagnosed (within the last month);
6. Diagnosed by a pediatric rheumatologist participating in the PERSON-JIA study;
7. Not yet receiving treatment, or received only Non-Steroidal Anti-Inflammatory Drugs (NSAIDS) or joint injections;

Patient (Exclusion):

1. Systemic arthritis category of JIA (it requires a different treatment approach);
2. Family is unable to complete study forms in English or French;
3. Patients who have already started systemic corticosteroid or any Disease Modifying Anti-Rheumatic Drug (DMARD).

Lieu de l'étude

BC Children's Hospital
BC Children's Hospital
Vancouver, British Columbia
Canada

Contactez l'équipe d'étude

Primary Contact

Jaime Guzman, MD MSc FRCPC

[email protected]
604 875 2437
Étude parrainée par
University of British Columbia
Participants recherchés
Plus d'informations
ID de l'étude: NCT05310799