106 Participants Needed

Transition Coaching for Juvenile Arthritis

(TRACE Trial)

KB
MB
Overseen ByMichelle Batthish, MD
Age: < 18
Sex: Any
Trial Phase: Academic
Sponsor: McMaster University
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

What You Need to Know Before You Apply

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.

Do I need to stop my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

How is the Transition Coach Intervention treatment for juvenile arthritis different from other treatments?

The Transition Coach Intervention is unique because it focuses on helping young patients with juvenile arthritis move smoothly from pediatric to adult healthcare, addressing a critical gap in care that often leads to poor outcomes. Unlike traditional treatments that focus solely on managing symptoms, this intervention aims to improve the overall transition process, which is often unsuccessful for about 50% of patients.12345

What data supports the effectiveness of the treatment Standard of Care- Youth Transition Roadmap, Transition Coach Intervention for juvenile arthritis?

The research highlights the importance of transitional care for adolescents with juvenile idiopathic arthritis (JIA), noting that a structured transition program can improve the quality of life and reduce drop-out rates from care. Although specific outcome data is limited, the implementation of a clinical transition pathway has shown to enhance patient satisfaction and self-management skills.12567

Are You a Good Fit for This Trial?

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.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Baseline Assessment

Participants complete baseline questionnaires to gather demographic and health information

1 week

Transition Coach Intervention

Participants in the intervention group meet with a transition coach and clinical psychologist over 6 months

6 months
6 visits with transition coach, 2 visits with psychologist (phone or telemedicine)

Follow-up

Participants are monitored for changes in self-efficacy and satisfaction with the intervention

3 months

What Are the Treatments Tested in This Trial?

Interventions

  • Standard of Care- Youth Transition Roadmap
  • Transition Coach Intervention
Trial Overview The 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.
How Is the Trial Designed?
2Treatment groups
Experimental Treatment
Active Control
Group I: Transition Coach InterventionExperimental Treatment1 Intervention
Group II: Standard of CareActive Control1 Intervention

Find a Clinic Near You

Who Is Running the Clinical Trial?

McMaster University

Lead Sponsor

Trials
936
Recruited
2,630,000+

Published Research Related to This Trial

The implementation of a clinical transition pathway for young people with juvenile-onset rheumatic and musculoskeletal diseases significantly reduced the drop-out rate from 35% to just 5.1% in the adult clinic and 1.3% in the dedicated adolescent JIA-clinic, indicating improved patient retention during the transition process.
Young people reported high satisfaction with the transition process, scoring an average of 7.7 and 7.5 on satisfaction scales, and demonstrated strong self-management skills, with self-efficacy scores of 59.7 and 58.2, suggesting they feel confident in managing their condition post-transition.
Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases.Walter, M., Kamphuis, S., van Pelt, P., et al.[2018]

Citations

User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. [2022]
Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases. [2018]
The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. [2023]
Transitional care for adolescents with juvenile idiopathic arthritis: a Delphi study. [2016]
Patients with juvenile idiopathic arthritis become adults: the role of transitional care. [2019]
Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. [2016]
Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project. [2022]
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