Transition Coaching for Juvenile Arthritis
(TRACE Trial)

Recruiting in Palo Alto (17 mi)

Age: < 18

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: McMaster University

No Placebo Group

Trial Summary

What is the purpose of this trial?

Pediatric patients with Juvenile Idiopathic Arthritis or Inflammatory Bowel Disease who are preparing to transition into adult care face many unique challenges, and, to date, there is no comprehensive and implementable model of transition care in Canada or the United States. These patients, in addition to the systemic inflammatory nature of their diseases, are also in a period of immense psycho-social stress due to changes in school structure, employment, and general psycho-social growth. A poorly managed transition can have adverse effects on the quality and experience of care as well as contribute to poor disease outcomes including increased morbidity and even mortality. The goal of this study is to determine the feasibility of using a transition coach intervention to help patients in their transition from pediatric to adult care.

Research Team

Eligibility Criteria

This trial is for English-speaking 16-17 year olds with Juvenile Idiopathic Arthritis or Inflammatory Bowel Disease who have access to a phone or laptop and can participate over a 9-month period. It aims to help them transition from pediatric to adult healthcare.

Inclusion Criteria

I am 16 or 17 years old with Inflammatory Bowel Disease.

I am 16 or 17 years old with Juvenile Idiopathic Arthritis.

Can communicate in English

See 2 more

Exclusion Criteria

I am unable to communicate in English.

Treatment Details

Interventions

Standard of Care- Youth Transition Roadmap (Behavioral Intervention)
Transition Coach Intervention (Behavioral Intervention)

Trial OverviewThe study tests if having a 'transition coach' helps these young patients manage their shift into adult care better than the usual methods. The coach will provide guidance tailored to each individual's needs.

Participant Groups

2Treatment groups

Experimental Treatment

Active Control

Group I: Transition Coach InterventionExperimental Treatment1 Intervention

Half (53) of the participants will be randomly allocated to the Transition Coach Intervention arm of the study. Individuals in the Transition Coach Intervention group will receive the current standard of care (receiving the Youth Transition Roadmap) and meet with the transition coach six times and with a clinical psychologist two times over the course of six months. The meetings between the participant and TC/psychologist will occur over the phone or using the Ontario Telemedicine Network or EPIC.

Group II: Standard of CareActive Control1 Intervention

The other half of participants will only receive the current standard of care is the Youth Transition Roadmap which has been developed by Hamilton Health Sciences and provides patients information about 5 domains of healthcare transition; Self-Advocacy, Medication Management, General Health, Lifestyle Issues and Future Planning related to education and vocation.