Table 2 Timeline and structure of the intervention provided by the transition navigator (core component 2)
Study time period | Activities of the transition navigator |
|---|---|
Enrollment phase: To → 2 months after randomization | Pre-meeting with CD care team: This will consist of a case-review between the navigator and HCPs to review the AYA’s medical and psychosocial history, describe the plan for transition and establish a coordinated care pathway to be facilitated by the navigator. Among AYAs with an uncomplicated history, this review and planning could be done by email; otherwise, video teleconference software will be used Introductory meeting with the AYA and guardians/caregivers: The navigator will summarize the care pathway, the individualized goals of the intervention and answer basic questions about transfer to adult care. The navigator will establish SMART (Specific, Measurable, Achievable, Realistic, Time-based) goals for the family and AYA Second meeting with AYA alone: This meeting is intended to build trust, establish the limits of confidentiality, methods of communication, and boundaries. The navigator will propose SMART goals which may be distinct from the goals established with the family Meeting for individualized assessment: The aforementioned assessment tools will be administered (Core Component 1). Note: At the AYA’s discretion, this meeting may be combined with the meeting with the AYA alone and/or the meeting with guardians/caregivers |
Maintenance phase: 2 months after randomization→ 1–2 years after transfer | The frequency of the virtual meetings during the maintenance phase will be flexible, with a minimum of 2 visits per year, depending on the needs and willingness of the AYA In the year around transfer (from 6 months prior to transfer, to 6 months after transfer), a minimum of 3–4 meetings will be planned A detailed script will be provided to the navigators to ensure a standardized list of topics are covered. The navigator will also work with the AYA and healthcare team to address deficits based on the AYA’s answers. Example questions to be asked by the navigator include: How are you finding the quality of your health care? How are things going with the biologic infusion clinics and the Patients Services Program (if applicable) How are you filling your prescriptions? How are the cost of your prescriptions covered? Do you know how to work with your insurance company to ensure your medications are covered? How did your visit with the doctor go? Did you parents go with you? How was your visit with the adult doctor? Did you find her/him approachable and knowledgeable? Did you feel you had enough time with the doctor? Did the adult doctor talk to you about colonoscopy, and how that might differ from colonoscopy in a pediatric hospital? What are you plans for post-secondary school work/university/college? Have you investigated your university’s disability program, and any accommodations to which you might be entitled because of your IBD? |
Conclusion phase: end of study | Ongoing feedback of clinical and psychosocial concerns with adult GI Intervention completion will depend on patient readiness and the success of the skill-building exercises (Core Component 3), typically 1–2 years after transfer depending on age at enrollment Final assessments will be administered by the navigator at the final visit (Core Component 2), and the AYA will be instructed on how to complete the outcome measures |