Q: When should transition of care begin?
A: Transition education should start with a general introduction during pre-adolescence, as early as ten years of age, depending on the maturity of the child. This allows for a gradual, developmentally appropriate shift in responsibility from caretaker to adolescent as a more structured transition process begins in early adolescence, usually around 12-14 years of age. The child and family should have a general understanding of what will occur over the next few years to prepare their child as a young adult for transfer to adult transplant providers.
Q: Why is transition education important?
A: There is data to show that children who did not develop skills for independent management of their health care needs did poorly after transfer to adult programs. It is important to learn transition skills gradually over time, so that competency in self-management and advocacy skills improves with practice and experience until the young adult achieves independence in their care to the best of their ability.
Q: How can you best assess the AYA’s progress in taking responsibility for their care?
A: Ideally, an assessment of the AYA’s progress in acquiring transition skills should be obtained every six months during clinic or scheduled as a virtual transition session. A comprehensive assessment can be completed through transition readiness assessment (TRA) tools including the AST Transition toolkit, the Trxansition Index, the Transition Readiness Assessment Questionnaire (TRAQ), Got Transition Readiness Assessment, and STARx (links are in Resources). Areas of assessment include knowledge of the AYA’s transplant and medications, adherence, healthcare management and needs, risky behaviors, reproductive health knowledge, school and employment, psychosocial support and mental health, and insurance basics. Progress in goal achievement and knowledge/skill deficits are identified so that interventions can be formulated to support continued progress in their transition journey.
Q: What are the recommendations for the pediatric team at the final pediatric visit?
A: Providing closure for the young adult, their family, and the pediatric team is important. Consider developing a ritual that will work for your transplant team and setting. Some centers have provided a transition certificate for the YA at their final visit, have had some form of a celebration such as throwing confetti, or a receiving line as the YA leaves the pediatric clinic for the final time. Additionally, the YA should feel confident that the pediatric team has collaborated with the adult team during the transition process to ensure that care is comprehensive and uninterrupted from one setting to another. They should understand that the pediatric team becomes “consultants” to the adult transplant team if they have questions about the YA’s history or medical management. Most importantly, the YA should feel supported in seeing transition/transfer as a natural and expected step as an emerging adult, as they are taking on other aspects of an independent adult life. YAs with intellectual disability should also be supported in their level of understanding of this change with praise for what they have accomplished to the best of their ability and strategies for engagement with their new adult transplant providers.
Q: When is the optimal time to transfer to adult transplant providers?
A: The timing for transfer to the adult transplant care should be individualized based on the YA’s medical and psychosocial stability, cognitive functioning, and hospital system policy. Allowing flexibility for the age of transfer is important for ensuring a successful transfer. Transfer ages vary by center, but usually range from 18 to 23 years of age.
Q: What are the top priorities for the initial visit with the adult transplant team?
A: Priorities for the first adult clinic appointment should be:
- Establish physician-patient rapport. The provider should make eye contact and try to “connect” with the YA, listen intently, and ask open-ended questions to encourage discussion. Avoid looking at and working on the computer as you speak with the patient.
- Discuss and confirm the YA’s preferred communication methods that would promote engagement and routine contact with the team.
- Confirm expectations and guidelines for obtaining labs, follow-up appointments, medication refills, and communication between visits.
- Ensure time for the YA’s questions, and those of a parent or support person if applicable. Encourage discussion about the transfer event, continued transition into adult care, and the systems differences between pediatric and adult care as the YA adapts to the adult transplant setting.
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