Transition Program Structure

Transition program development requires a multidisciplinary team approach to provide an effective and comprehensive pathway for adolescents and young adults (AYA) to understand their transplant care to the best of their ability and to achieve optimal self-management skills and independence. Engagement of all stakeholders – the AYA, parents/caregivers, pediatric team, adult team, and the health care system – is important in developing and supporting transition of care in transplantation with each having specific roles and responsibilities. This section will present information and recommendations for developing a transplant transition program based on the Six Core Elements of Transition™ from Got Transition^©for the pediatric and adult transplant teams.

Quick Find: Pediatric Providers | Adult Providers | Multi-Provider Collaborative Transition Clinic

Pediatric Providers

Core Element	What the pediatric provider can do
I. Transition policy Sample policy	Develop a transition policy with input from the AYA, parents, and team that reflects the practice’s approach to transition, changes in privacy and consent, and goal age for transfer to adult care. Provide education to all team members about policy, individual roles in transition, and program goals. Present and review the transition policy with the AYA and family beginning at 12 to 14 years of age. Routinely provide an overview of the transition process as part of ongoing care. Discuss a proposed timeline for transition and transfer, and update the timeline at least annually.
II. Tracking and Monitoring Sample tracking tool	Establish the process and criteria for identifying transition-aged youth. Develop a process to track receipt of each Core Element, integrating with electronic medical records (EMR) when possible. Discuss and assign individual team members’ responsibilities for tracking and monitoring.
III. Transition Readiness Assessment (TRA)	Conduct routine assessment of transition readiness, at least annually, as the AYA progresses through the transition process. Tools: UNC TRxANSITION Scale, Six Core Elements of Health Care Transition, Transition Readiness Assessment Questionnaire (TRAQ), AST Transition Toolkit Provide transplant education and strategies for skill acquisition based on identified needs from the TRA.
IV. Transition Planning Sample medical summary and plan	Continue TRA during the transition period; annual goal updates Prepare AYA and parents for the adult approach to care Clinical focus on health maintenance vs. growth and development Legal changes in decision-making, privacy, and consent (guardianship, power of attorney) Learn more Determine and plan for optimal timing for transfer Assist in finding adult providers and referrals Obtain consent from AYA for release of medical information Develop a medical summary with the AYA’s input for the adult team. Create a transition “passport” for the AYA from this information to provide a concise summary of their transplant healthcare and history.
V. Transfer of Care	Provide a transfer package for the adult team: clinical records, final TRA, plan of care and goals, medical summary, legal documents (if needed) Communicate with adult providers prior to transfer: peer to peer discussions, “Meet and Greet” with AYA and teams, discuss provider roles in transfer of care, confirm the adult team’s contact information for the AYA Confirm date of first adult clinic appointment
VI. Transition Completion	Contact the AYA to confirm attendance at the first adult clinic appointment. In collaboration with the adult team, determine outcomes that will be monitored post-transfer and the length of time to monitor. Obtain the AYA’s consent to monitor outcomes post-transfer. Obtain post-transfer feedback from patients, caregivers, and providers Continue to develop collaborative partnerships with adult teams for ongoing improvements in transition, transfer, and post-transfer monitoring.

Adult Providers

Core Elements	What the adult provider can do
I. Transition and care policy guide Sample adult policy	Create a transition of care policy that describes adult program goals and their approach to continuing transition of care. This policy should include a description of all stakeholder roles (patient, caregiver, adult team) as well as the adult approach to privacy and consent. This should be shared and discussed at the first adult visit. Build a team of providers who are educated about the practice’s approach to transition and who are committed to the young adult’s (YA) success. Tailor this team to the available transplant center resources Transition Director/Coordinator (Program lead) Social Worker Transplant physician Transplant coordinator Advanced practice providers Psychologist/Psychiatrist Nutritionist Pharmacist Financial coordinator Scheduler
II. Tracking and Monitoring Sample flow sheet	Develop a system to track YA progress through the Core Elements from the adult setting perspective integrating with electronic medical records (EMR) when possible. REDCap and Excel can also be used. Discuss and assign individual team members’ responsibilities for submitting data (e.g., the adult transplant coordinator can assist with patient list maintenance and updates for tracking). Provide feedback for the YA as they continue to develop self-management and advocacy skills.
III. Orientation to adult practice Sample Welcome letter Sample orientation packet Meet and Greet template	Establish a process to welcome and orient young adults into adult practice. Create a Welcome Packet about the adult clinic which includes FAQS and contact numbers. Schedule a virtual “Meet and Greet” for patients, a support person, and representatives from the pediatric and adult teams prior to the first adult clinic appointment.
IV. Integration into the adult practice	Communicate and collaborate with the pediatric team for the YA’s transfer. Ensure delivery and review of the transfer package. Clinical information: medical summary and history, operative reports, imaging reports, pathology, HLA, medication list, lab reports Information on social support, caregivers, mental health, psychosocial concerns Legal documents if needed Establish a collaborative partnership with the referring pediatric providers. Have open communication about patients who are being referred for transfer of care Discuss readiness of patients for transfer Discuss the YA’s clinical and psychosocial issues and how they are being addressed Confirm availability of community or hospital-based resources that are needed Avoid transferring patients who are unstable or in crisis. Contact the YA before the initial visit to welcome them to the adult practice via phone, text or portal message. This should be done in addition to a “Meet and Greet.”
V. Initial Visits Sample self-care assessment	Address the YA’s needs and concerns during the initial visit, update their self-care assessment and medical summary. Determine the frequency of visits during the first year post-transfer. These may be scheduled every three to six months, then annually as the YA fully integrates into adult care. Review the transfer package prior to the first visit to identify medical and psychosocial problems that may need to be addressed. Integrate the YA’s self-care assessment into the first visit and subsequent visits as needed.
VI. Ongoing Care Sample feedback survey	Confirm transfer completion with the pediatric team. Provide ongoing care with self-management skill building and assessment as the YA achieves full executive functioning. Consider partnering with specialists in other fields for adult medical care (e.g., dermatology, gynecology, maternal/fetal medicine, endocrinology). The YA should have established care with a primary care physician (PCP) prior to transfer. If this has not occurred, the adult team should refer the YA to a new PCP. Adult specialist referrals should be made as indicated. YAs may benefit from referrals for adult services through community agencies that provide vocational opportunities, in addition to support from their PCP. Provide feedback to the YA’s pediatric team. Obtain feedback from the YA and caregiver during the adjustment period into adult care. Monitor for health insurance issues and refer to Social Work as needed.

A Multi-Provider Collaborative Transition Clinic

Adapted From the Six Core Elements™

Six Core Elements - Integrating Young Adults into Adult Health Care Overview (gottransition.org)

Transition of care models vary based on the populations being served, institutional policies, and resources. This model of a joint pediatric and adult transplant transition clinic is provided as an example of how a collaborative clinic could be established. The structure is based on experience at a large adult transplant clinic within an academic hospital setting which is physically adjacent to a pediatric transplant center and clinic within a pediatric hospital. Foundational strategies to develop a collaborative transition clinic may include the following features:

I. Transition Structure and Care Policy Guide

The pediatric and adult teams should establish the structure, policy, and timeline for a collaborative transition clinic if this is determined to be the best strategy for their system.
A policy that describes the collaborative approach to care within a joint clinic should be developed.
- Engage the young adult for their perspectives of the adult approach to care.
- Discuss changes in privacy and consent within the adult setting.
Identify the core collaborative transplant transition team:
- Transition Director/Coordinator (physician, nurse, social worker, or psychologist)
- Pediatric Transplant Specialist
- Pediatric Transplant Coordinator
- Adult Transplant Specialist
- Adult Transplant Coordinator
- Clinic Scheduler
- Additional team members: Social Work, Transplant Advanced Practice Providers (APPs), Transplant Pharmacy, Transplant Surgery (if necessary), Nutrition, Psychiatry/Psychology, Adolescent Medicine/gynecology, Gender and Sexual Development, Dermatology, Financial Coordinator/Insurance Specialist, Patient Advocacy, Scheduler
Confirm clinic structure and responsibilities:
- Clinic setting:
  - If the adult and pediatric transplant centers are affiliated, the adult transplant clinic setting may be the best physical location for a collaborative clinic due to administrative issues, billing, and insurance.
  - If the adult transplant center is not affiliated with a pediatric transplant center, these visits should be scheduled in the adult clinic.
  - The initial adult appointment should be scheduled within three months of the final pediatric clinic visit and sufficient time should be allotted for the intake appointment.
- Clinic frequency and size:
  - Define clinic frequency with the interval between check-ups. This should be based on the number of patients, acuity, and predicted needs. More at-risk patients would likely benefit from closer follow-up while stable patients may be seen every six months. This may be a standing clinic (i.e., the first Tuesday of every month) or a mutually arranged appointment to allow for more flexibility in considering the YA’s and provider’s availability.
Resources:
- Based on clinic staffing, resources, and patient need, determine how many patients can be seen in each clinic. For example, a clinic may have sufficient resources to schedule up to three new patients with an hour appointment each and up to five patients with follow-up appointments that can be assessed in 30 minutes or less.
- Roles and responsibilities: The transition director and transition core team should confirm the roles and responsibilities of each team member participating in collaborative clinic to ensure a uniform approach to transition.
- Medical summary and records: The pediatric team is responsible for providing a comprehensive medical summary and the associated records, particularly when information is not easily accessed within a common EMR. Information included in the transition “package” should be discussed during a collaborative pre-meeting so the adult team has a thorough understanding of the YA’s history and transplant care to plan for follow-up in the adult setting.
- Dictation and billing: The provider responsible for dictating and billing the encounter should be identified and confirmed. If collaborative clinic is held in the adult setting, dictation and billing should be completed by the adult provider; however, this results in the pediatric provider providing a service without billing. The billing aspect of collaborative clinic is under discussion for best practice within systems.
- The transplant/transition coordinator is responsible for conveying information to all stakeholders about the location of the collaborative transition clinic and scheduling.
Age considerations:
- The pediatric team should determine the age at which a patient attends their first collaborative transition clinic, with agreement by the adult team. This decision should be based on chronological age, developmental level, current medical status, and progress in transition readiness; however, some flexibility is necessary in dealing with additional medical, psychosocial, and cognitive issues.
- The adult team should evaluate the optimal age at which the patient will no longer attend the collaborative clinic and will transfer to the full adult team within a standard transplant clinic model. Flexibility is again essential so that the timing of transfer is based on medical stability, adherence, and attainment of self-management skills. Some patients may be prepared for transfer following two or three collaborative clinic appointments, while others may require a longer stay in collaborative clinic based on their transition readiness skills.

II. Tracking and Monitoring

The process for identifying young adults who would benefit from a collaborative clinic setting should be identified. The EMR, an Excel spreadsheet, or REDCap can be used for patient tracking and monitoring.
The adult transplant coordinator should be responsible for tracking patients in regard to clinic attendance, adherence to lab requests and other appointments or testing, and in progressing through the adapted Six Core Elements™. Tracking is critical in identifying problems early on that may require more focused attention.
The role of the pediatric team evolves from being the primary provider to that of a consultant as the YA progresses in the collaborative clinic setting and the adult provider takes on a greater role in care management.

III. Transition Readiness

Transition readiness assessment (TRA) begins in the pediatric setting, usually around 13 years of age, and is conducted routinely, usually every 6 to 12 months. The pediatric team should provide a final TRA prior to the first collaborative clinic appointment. TRA should continue into the collaborative/adult setting until the YA is fully engaged in their transplant healthcare to the best of their ability.
Establish a process to welcome, engage, and orient young adults to collaborative clinic. This may include contact numbers, information about the patient portal, list of providers, and available services within the adult transplant center.
Having a walk-through of the new clinic or a virtual Meet and Greet may help introduce the young adult to the new providers, engage them in the new clinic structure, and foster a collaborative relationship between all stakeholders.
All stakeholders are involved in role transition during collaborative clinic. The pediatric team becomes a consultant in the patient’s care as the adult team becomes more active in medical management and the young adult achieves self-management skills and independence in their transplant healthcare. The duration of this process may range from one to several years depending on transition readiness, medical stability, and resources.
Following “graduation” from the collaborative transition clinic, the patient can be entered into the normal scheduling pool with an adult transplant provider. Referrals for additional providers in the adult setting will be obtained including primary care physicians and specialists such as dermatology, obstetrics and gynecology, and endocrinology.
The pediatric team should be consulted as needed, particularly during the initial transfer period, and should be updated with any significant change in patient status such as death, graft loss, or retransplant.
Feedback should be obtained from the YA about their experience in collaborative clinic to assist in program evaluation and development.

IV. Orientation to Practice

Establish a process to welcome, engage, and orient young adults to collaborative clinic. This may include contact numbers, information about the patient portal, list of providers, and available services within the adult transplant center.
Having a walk-through of the new clinic or a virtual Meet and Greet may help introduce the young adult to the new providers, engage them in the new clinic structure, and foster a collaborative relationship between all stakeholders.

V. Integration Into Adult Practice

All stakeholders are involved in role transition during collaborative clinic. The pediatric team becomes a consultant in the patient’s care as the adult team becomes more active in medical management and the young adult achieves self-management skills and independence in their transplant healthcare. The duration of this process may range from one to several years depending on transition readiness, medical stability, and resources.

VI. Ongoing Care

Following “graduation” from the collaborative transition clinic, the patient can be entered into the normal scheduling pool with an adult transplant provider. Referrals for additional providers in the adult setting will be obtained including primary care physicians and specialists such as dermatology, obstetrics and gynecology, and endocrinology.
The pediatric team should be consulted as needed, particularly during the initial transfer period, and should be updated with any significant change in patient status such as death, graft loss, or retransplant.
Feedback should be obtained from the YA about their experience in collaborative clinic to assist in program evaluation and development.