Transition Position Paper

3. Transition Readiness • Patients should have an assessment of their readi- ness for transition performed regularly, using either a generic or an SCD-specific tool (American Society of Hematology, 2021; Treadwell et al., 2015). Use of these tools can guide the patient’s specific transition plan- ning and determine the appropriate timing of the transfer of care. • Patients should have a neurocognitive assessment to identify deficits that may affect their transition readi- ness (Daly et al., 2011; Saulsberry-Abate et al., 2021). 4. Transition Planning • Consensus statements recommend that transition preparation focus on improved patient-provider com- munication and increased patient responsibility for self-management of the disease (AAP et al., 2011, 2015). • Transition preparation should be addressed annually and should include medical topics (e.g., SCD compli- cations, disease inheritance) as well as educational and vocational topics. • Pediatric providers should directly address insurance issues and any insurance coverage changes that will accompany an increase in the patient’s age. • Nursing staff members can facilitate transition by assessing preparedness, resources, relationships, and responsibilities as part of the individual transition plan (Fegran et al., 2014). • Providers caring for patients with SCD can normalize the transition process by helping families understand that transition to an adult-focused system of care is a normal part of development (Mahan et al., 2017). • Medical professionals should initiate an “adult” model of care during the adolescent period by seeing patients alone for part of the visit, directing questions to the adolescent during the visits, and (as the patient nears age 18) encouraging patients to call for appoint- ments and arrange their own medication refills. 5. Transfer of Care • Pediatric care providers should identify local adult care providers who have expertise or an interest in SCD.

• If the transition includes a transfer of care, it is help- ful to have the family meet the adult care provider prior to the transfer. Taking this step may improve the patient’s access and adherence to adult care (Bloom et al., 2012; Hankins et al., 2012). • The pediatric care providers should consider stag- gering the transfer so that patients are not changing primary care and subspecialty providers at the same time. • The transfer should occur when the patient, family, and providers agree that the patient is ready to take on an adult role in their care. If the hospital has set a specific age for transfer, a policy exception should be devel- oped for patients with cognitive delay or other special needs. • Transfers should be planned; making an abrupt trans- fer (e.g., during an unplanned hospital admission or a pregnancy) should be avoided. • Pediatric care providers should communicate directly with the adult care provider and send the new provider a written medical summary that includes the patient’s medical history, baseline laboratory test results, and an individualized pain management plan. 6. Transfer Completion • A transfer is not complete until the patient has been seen at least once in the adult care provider’s office, which should happen within 3 months of the patient’s leaving pediatric care. • Pediatric care providers should contact the AYA to confirm attendance at the first adult visit and follow up with the adult practice to confirm completion of the transfer (AAP et al., 2011, 2015). Consultation can be provided as needed. • Pediatric and adult care teams should continue to evaluate and adjust their transition process. This eval- uation should include the perspective of patients, families, and all involved providers.

CONCLUSION

reduce morbidity and the high rate of mortality from SCD complications. Transition readiness should be assessed regu- larly because the move from pediatric- to adult-focused care occurs over time rather than in a single event. Pediatric and adult care teams should work together and continuously eval- uate their transition processes.

All AYA patients with SCD should receive transition prepara- tion to help them maneuver from pediatric- to adult-focused health care. This preparation allows for greater independence and the development of self-management skills regardless of whether a transfer to a new provider is involved. Transition education before, during, and after the transfer of care may