Transition Coaching for Juvenile Arthritis

(TRACER Trial)

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

133 Participants Needed

Trial Summary

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 data supports the effectiveness of the treatment Transition Coaching for Juvenile Arthritis?

Research shows that structured transition programs, like transition coaching, help young people with juvenile arthritis move smoothly from pediatric to adult care, reducing drop-out rates and improving self-management skills. ^{1 2 3 4 5}

Is transition coaching for juvenile arthritis safe?

The research does not specifically address the safety of transition coaching, but it highlights the importance of structured transition programs for young adults with rheumatic diseases. These programs aim to improve care and outcomes, suggesting they are generally considered safe and beneficial. ^{1 2 6 7 8}

How is transition coaching different from other treatments for juvenile arthritis?

Transition coaching is unique because it focuses on helping young people with juvenile arthritis move smoothly from pediatric to adult healthcare. It includes education, counseling, and support for life changes, unlike traditional treatments that mainly focus on managing physical symptoms. ^{1 3 4 8 9}

What is the purpose of this trial?

TRACER is a study aiming to investigate the feasibility of transition coaching sessions for patients moving from paediatric to adult rheumatology care.

Research Team

Michelle Batthish, MD

Principal Investigator

McMaster University

Eligibility Criteria

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

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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]

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]

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]

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]

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]

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]

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]

References

1. England pubmed.ncbi.nlm.nih.gov

Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases. [2018]

2. Canada pubmed.ncbi.nlm.nih.gov

Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results. [2022]

3. Germany pubmed.ncbi.nlm.nih.gov

[Transition clinic--it is not always a simple segue in rheumatology for adults]. [2022]

4. Germany pubmed.ncbi.nlm.nih.gov

[New support services for the care of young patients with rheumatic diseases]. [2019]

5. United States pubmed.ncbi.nlm.nih.gov

The coming of age of adolescent rheumatology. [2022]

6. United States pubmed.ncbi.nlm.nih.gov

Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study. [2023]

7. England pubmed.ncbi.nlm.nih.gov

Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. [2021]

8. Germany pubmed.ncbi.nlm.nih.gov

[Transition from pediatric to adult rheumatological care]. [2018]

9. United States pubmed.ncbi.nlm.nih.gov

Adolescents with chronic disease. Transition to adult health care. [2019]