Transition Coaching for Juvenile Arthritis
(TRACER Trial)
Recruiting in Palo Alto (17 mi)
+1 other location
Overseen byMichelle Batthish, MD
Age: < 65
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: McMaster University
Disqualifiers: Cognitive impairment
No Placebo Group
Trial Summary
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.
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.
12345Is 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.
12678How 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.
13489Eligibility 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
+2 more
Exclusion Criteria
My thinking or memory problems prevent me from learning new health information.
Trial 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
Participant Groups
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.
2Treatment groups
Experimental Treatment
Active Control
Group I: Transition coaching - experimentalExperimental Treatment1 Intervention
Participants will receive 8 transition coaching sessions (1/month) in addition to standard care
Group II: Standard care - controlActive Control1 Intervention
Standard of care, appointments with adult rheumatology
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
McMaster Children's HospitalHamilton, Canada
Children's Hospital at London Health Sciences CentreLondon, Canada
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Who Is Running the Clinical Trial?
McMaster UniversityLead Sponsor
Western UniversityCollaborator
References
Successful implementation of a clinical transition pathway for adolescents with juvenile-onset rheumatic and musculoskeletal diseases. [2018]In 2008 a clinical transition pathway for young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMD) aiming at improving transitional care was instituted. Historical data on drop-out rate in our clinic was 35%, one year before the implementation of the transition pathway. This study aims to I) evaluate the effectiveness of the clinical transition pathway, II) evaluate the experiences and satisfaction of YP with the transitional process and evaluate their perceived self-management skills.
Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results. [2022]The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum effect. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps. The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers. The transitional care needs of patients, healthcare teams, and caregivers is well described in the literature. While various transition readiness scales exist, no longitudinal posttransfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied. Research questions that ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n = 107), young adults/caregivers (n = 23) prioritized research surrounding improved work, school, or social function. The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.
[Transition clinic--it is not always a simple segue in rheumatology for adults]. [2022]Chronic inflammatory rheumatic diseases with onset in childhood often persist into adulthood and result in a considerable number of patients in impairments of body functions and structures, activities at the individual level and participation in society. Continuation of health care beyond adolescence is, therefore, necessary. Its provision should be of high quality, coordinated, uninterrupted, patient-centred and developmentally appropriate to ensure smooth transitions between children's and adult services and positive outcomes of transition for the young people themselves. Existing research is very persuasive on the need to improve transitions for young people with rheumatic diseases. To achieve effective transition, not only disease specific, but also aspects of growth and development have to be taken into account. Paediatric and adult rheumatologists should establish close cooperation and implement specific transition programs to meet the special health care needs of these patients.
[New support services for the care of young patients with rheumatic diseases]. [2019]The transition process from pediatric to adult rheumatological and internistic care is a challenge for patients and medical personnel. Every second patient with a pediatric rheumatic disease has not achieved stable drug-free remission at early adulthood and therefore requires continuing rheumatological care. Approximately one third of young people with rheumatic diseases in Germany discontinue regular specialist care on their way to the adult healthcare setting. Newly developed support services and tools to improve the healthcare of young people with rheumatic diseases in Germany are presented.
The coming of age of adolescent rheumatology. [2022]The goal of planned adolescent health-care transition procedures is to optimize functioning and well-being for all young people, including those who have special health-care needs. In this regard, the transitioning of young people with childhood-onset rheumatic diseases to adult health care is increasingly important, particularly as many of these patients might continue to have active disease or considerable sequelae well into their adult lives. Key components of a successful plan for health-care transition include encouragement of patient self-advocacy, tailoring of the process to each individuals' needs, family adaptation, and readiness and training of relevant health-care providers. Improving outcomes in patients with serious rheumatic diseases presenting in adolescence will be achieved by increasing our understanding of the aetiopathogenesis of these disorders, identifying accurate predictors of the development and/or course of disease and better defining long-term outcomes. In this article, we discuss transitional health-care models, as well as the benefits and challenges of providing transitional care to adolescents with rheumatic diseases. We also highlight the need to ensure that research is integral to transitional care pathways.
Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study. [2023]Despite poor health care transition outcomes among young adults with pediatric rheumatic diseases, adoption of transition best practices is low. We sought to understand how structured transition processes were operationalized within pediatric rheumatology practices and what factors were perceived to enable adaptations during a global pandemic.
Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. [2021]Despite the risk for poor outcomes and gaps in care in the transfer from pediatric to adult care, most pediatric rheumatology centers lack formal transition pathways. As a first step in designing a pathway, we evaluated preparation for transition in a single-center cohort of adolescents and young adults (AYA) with rheumatologic conditions using the ADolescent Assessment of Preparation for Transition (ADAPT) survey.
[Transition from pediatric to adult rheumatological care]. [2018]Childhood onset rheumatic and musculoskeletal diseases often continue into adulthood. These diseases are associated with a high risk of permanent disability and impairment in the quality of life of people affected. Adolescence and young adulthood represent a particular risk phase for an unfavorable long-term outcome. During this challenging and future health-determining phase at least one in three patients stops seeking regular specialized healthcare and the health status of these people deteriorates after having left pediatric care. The key principles of transitional care have been defined, are generally accepted and are presented in this article. There is emerging evidence of the effectiveness of transitional care programs. The implementation of a structured transition into the routine care of adolescents and young adults with rheumatic diseases is necessary.
Adolescents with chronic disease. Transition to adult health care. [2019]Older adolescents are in the midst of many life changes related to physical and emotional development, education and career choices, family and peer relationships. The presence of a chronic disease adds an additional burden. At this stage of development, transfer of care to an adult facility becomes a major challenge for the adolescent, parents, and pediatric and adult care providers. This article describes an interdisciplinary transition program from pediatric to adult health care for older adolescents with rheumatic diseases. Care is transferred to an internist-rheumatologist who collaborates closely with the pediatric team. Scope of the program includes pretransitional assessments and interventions, including education, counseling, and referral around career, postsecondary education, sexuality, and other transitional issues. Benefits of and barriers to a structured transition program are discussed.