Transition Coaching for Juvenile Arthritis

(TRACER Trial)

Not currently recruiting at 1 trial location

Overseen By Michelle Batthish, MD

Age: < 65

Sex: Any

Trial Phase: Academic

Sponsor: McMaster University

Disqualifiers: Cognitive impairment

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 8

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial examines whether transition coaching can assist young people with juvenile arthritis in moving from pediatric to adult rheumatology care. Participants will receive either standard care or eight transition coaching sessions to determine which approach offers better support during this change. It suits those with a pediatric-onset rheumatic disease who are nearing their final pediatric rheumatology appointment. Participants must communicate in English, have a device for video calls, and be available for the next eight months. As an unphased trial, this study provides a unique opportunity to contribute to research that could enhance the transition process for future patients.

Will I have to stop taking my current medications?

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

What prior data suggests that transition coaching is safe for young adults with rheumatic diseases?

Research has shown that transition coaching is generally safe for young people moving from child to adult healthcare. Studies have found that this support helps young adults manage their health better without harm. For instance, a review found that many patients successfully moved to adult care when using a transition tool, suggesting the process is well-received and safe. Additionally, a good transition plan focuses on building self-management skills and taking logical steps, emphasizing safety and preparation.

While transition coaching is not a medical treatment, it is designed to help patients manage their health more effectively. Overall, no major negative effects have been reported, indicating that transition coaching is a well-tolerated approach for young adults with juvenile arthritis. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about transition coaching for juvenile arthritis because it offers a new approach to managing the transition from pediatric to adult care. Unlike the standard care, which typically involves regular appointments with an adult rheumatologist, transition coaching provides personalized support through eight monthly sessions. These sessions aim to empower young patients by helping them develop self-management skills and confidence as they move to adult healthcare. This method focuses on equipping patients with tools for better disease management, potentially improving long-term health outcomes and quality of life.

What evidence suggests that transition coaching is effective for juvenile arthritis?

This trial will compare transition coaching with standard care for young adults with juvenile arthritis. Research has shown that transition coaching can assist young adults with juvenile arthritis. A new type of clinic, which includes coaching, has made the move from child to adult care smoother. Studies have demonstrated that when young adults actively participate in their care, their health improves. Patients, caregivers, and health professionals agree that a structured plan for this transition is crucial for managing juvenile idiopathic arthritis. This evidence suggests that transition coaching can be very helpful during this important life change. ^{2 3 5 6 7}

Who Is on the Research Team?

Michelle Batthish, MD

Principal Investigator

McMaster University

Are You a Good Fit for This Trial?

This trial is for young people with pediatric-onset rheumatic diseases like arthritis and lupus, who are transitioning to adult care. Participants need a phone or device for video calls, must be available for the next 8 months, and able to communicate in English. Those with cognitive impairments that prevent participation in educational sessions cannot join.

Inclusion Criteria

I had my last pediatric rheumatology appointment before moving to adult care.

Able to communicate in English

Have a phone or device capable of participating in video conference

Exclusion Criteria

My thinking or memory problems prevent me from learning new health information.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Transition Coaching

Participants receive 8 transition coaching sessions (1/month) in addition to standard care

8 months

8 visits (virtual)

Follow-up

Participants are monitored for safety and effectiveness after transition coaching

3 years

What Are the Treatments Tested in This Trial?

Interventions

• Transition coaching

Trial Overview The TRACER study is testing transition coaching sessions designed to help patients move from pediatric to adult rheumatology care smoothly. The feasibility of these coaching interventions through video conferencing will be evaluated.

How Is the Trial Designed?

Group I: Transition coaching - experimental Experimental Treatment 1 Intervention

Participants will receive 8 transition coaching sessions (1/month) in addition to standard care

Group II: Standard care - control Active Control 1 Intervention

Standard of care, appointments with adult rheumatology

Who Is Running the Clinical Trial?

McMaster University

Lead Sponsor

Trials

936

Recruited

2,630,000+

Western University

Collaborator

Trials

31

Recruited

129,000+

Published Research Related to This Trial

The scoping review identified significant gaps in transition research for young adults with rheumatic diseases, particularly the lack of longitudinal studies confirming the effectiveness of existing transition readiness scales.

Multimodal interventions are shown to be the most effective in improving transition outcomes, and future research should focus on enhancing self-efficacy and health literacy, as well as identifying young adults with psychosocial vulnerabilities to support their transition to adult care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results. Bitencourt, N., Lawson, E., Bridges, J., et al.[2022]

The article outlines an interdisciplinary transition program designed to help older adolescents with rheumatic diseases move from pediatric to adult healthcare, emphasizing the importance of collaboration between pediatric and adult care providers.

The program includes pretransitional assessments and interventions that address not only medical needs but also educational and personal issues, highlighting the comprehensive support necessary for a successful transition.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Adolescents with chronic disease. Transition to adult health care. Rettig, P., Athreya, BH.[2019]

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.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

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]

Childhood rheumatic and musculoskeletal diseases can lead to long-term disability and decreased quality of life, especially during the transition from pediatric to adult care, where one in three patients stop seeking regular healthcare.

Structured transitional care programs are emerging as effective strategies to improve health outcomes for adolescents and young adults with these diseases, highlighting the need for their implementation in routine care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Transition from pediatric to adult rheumatological care]. Minden, K., Schalm, S.[2018]

Structured transition processes in pediatric rheumatology are crucial for improving health care outcomes for young adults, but their implementation is often hindered by a lack of access to electronic medical record (EMR) tools, especially during disruptions like the pandemic.

Engagement of nursing staff and educational workflows led by nonphysicians were identified as key factors for successful transition policy implementation, highlighting the need for comprehensive support systems to address the complexities of youth with pediatric rheumatic diseases.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study. Chang, JC., Sears, C., Bitencourt, N., et al.[2023]

Adolescents and young adults (AYA) with rheumatologic conditions often lack comprehensive counseling about transitioning to adult care, with less than half receiving specific guidance on transferring to an adult provider.

Lower educational attainment is linked to poorer self-management and transition preparation scores, highlighting the need for tailored support for younger patients and those with less education to improve their transition experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. Roberts, JE., Halyabar, O., Petty, CR., et al.[2021]

Transitioning adolescents with childhood-onset rheumatic diseases to adult health care is crucial, as many may continue to experience active disease or significant health issues into adulthood.

Successful health-care transition plans should focus on patient self-advocacy, individualized processes, family involvement, and training for health-care providers, while also emphasizing the importance of research in improving long-term outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The coming of age of adolescent rheumatology. Eleftheriou, D., Isenberg, DA., Wedderburn, LR., et al.[2022]

Chronic inflammatory rheumatic diseases that start in childhood often continue into adulthood, leading to significant impairments in patients' daily activities and social participation, highlighting the need for ongoing healthcare into adulthood.

Effective transitions from pediatric to adult healthcare services are crucial and should be coordinated, patient-centered, and developmentally appropriate, requiring collaboration between pediatric and adult rheumatologists to address the unique needs of these patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Transition clinic--it is not always a simple segue in rheumatology for adults]. Minden, K., Niewerth, M., Zink, A., et al.[2022]

Many young patients with pediatric rheumatic diseases struggle to transition to adult care, with about 50% not achieving stable drug-free remission and needing ongoing treatment.

Around one third of these young patients in Germany stop attending regular specialist care during this transition, highlighting the need for improved support services and tools to facilitate their healthcare journey.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[New support services for the care of young patients with rheumatic diseases]. Schalm, S., Niewerth, M., Minden, K.[2019]

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11346723/

Transition to Adulthood through Coaching and ... A novel transition clinic structure for adolescent and young adult patients with childhood onset rheumatic disease improves transition outcomes.

2. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11654283/

Consensus on transition care for juvenile idiopathic arthritis Consensus on transition care for juvenile idiopathic arthritis: a Delphi study with youth, caregivers, and health professionals

3. clinicaltrials.gov clinicaltrials.gov/study/NCT05570617

NCT05570617 | Transition to Adulthood Through Coaching ... 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 ...

4. sciencedirect.com sciencedirect.com/science/article/abs/pii/S0738399113000773

Transitional care for young adults with juvenile idiopathic ... Accumulating evidence reveals that active involvement of the (young) adult with a chronic disease has positive effects on health outcomes [5], [6], [7]. Our ...

5. journals.plos.org journals.plos.org/plosone/article?id=10.1371/journal.pone.0295174

A feasibility study protocol | PLOS One - Research journals A novel transition clinic structure for adolescent and young adult patients with childhood onset rheumatic disease improves transition outcomes.

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11865105/

Transition-related outcomes among a cohort of patients with ... This study aims to assess transition outcomes in a group of JIA patients during their passage from pediatric to adult healthcare assistance at a single center.

7. academic.oup.com academic.oup.com/rheumap/article/8/4/rkae130/7818353

A meta-analysis and systematic review of the use of transition ... The results showed that 86.6% of patients who used a transition tool attended an adult outpatient clinic within 1 year of their last paediatric ...