Transition Position Paper

SUMMARY OF THE PROBLEM

limited staff training, a lack of identified personnel responsi- ble for transition, and financial limitations (Lebensburger et al., 2012; Sobota et al., 2011). Professional organizations such as APHON and ASPHO, which represent providers caring for these AYA patients, should advocate for better reim- bursement for transition planning and services than what is currently in place (McManus et al., 2021). The limited availability of adult providers with expertise in SCD is a significant barrier to a smooth transition (Lebens- burger et al., 2015; Sobota et al., 2011). Pediatric providers should identify specialists or interested generalists in their area who are willing to collaborate on care (Kanter et al., 2020). Providers of adult primary care can use resources such as the NHLBI’s evidence-based guidelines or take advantage of regional learning consortiums to remain up-to-date on cur- rent recommendations for treating SCD (NHLBI, 2014b).

Health care transition is defined as a “purposeful, planned” process with a goal of maximizing “lifelong functioning and potential through the provision of high quality, devel- opmentally appropriate healthcare services that continue uninterrupted as the individual moves from adolescence to adulthood” (White et al., 2018). Although a transfer from pediatric to adult providers is often a component of tran- sition, the process must start well before the transfer and continue until the young adult is well established in an adult-focused system of care (DeBaun & Telfair, 2012; Sauls- berry et al., 2019). Early preparation for the transition helps reduce gaps in care by ensuring that evidence-based routine healthcare maintenance continues uninterrupted. Despite increasing recognition of the importance of tran- sition as part of the continuum of health care for AYAs with SCD, established, effective strategies are scarce. Barriers to providing support during a patient’s transition include

RECOMMENDATIONS

• The practice or institution should have a clear transi- tion policy that is accessible to providers, patients, and families (e.g., posted on the organization’s website, posted in exam rooms, or mailed to families). • Whether or not a transfer of care will occur, the dis- cussions about transition should include details about changes in privacy when the patient turns 18 and any shift to an adult model of care, which requires much greater autonomy than pediatric care (White et al., 2018). • The transition planning team should be multidis- ciplinary and should include physicians, advanced practice providers, nurses, psychologists, and social workers from pediatric and adult care settings (Jordan et al., 2013). • Pediatric providers should allow patients and care- givers to express their feelings and concerns about transition (e.g., fears about transferring to a new pro- vider) and should include family members in the transition plan. 2. Tracking and Monitoring • By age 14, every patient should have an individualized and documented transition plan that is updated annu- ally (AAP et al., 2011, 2015). • Each institution should have a way to identify and track transition-aged patients and ensure that planning has been done and documented. Integration into the electronic medical record can help improve transition planning (Sharma et al., 2018).

It is the position of APHON and ASPHO that programs car- ing for AYAs with SCD must provide transition preparation focused on helping patients become independent in man- aging their disease and integrating into an adult-focused model of care. Got Transition, a program of the National Alliance to Advance Adolescent Health, proposes using six core elements of transition as a framework to guide best practices: developing a healthcare transition policy, iden- tifying transition-aged youth and maintaining a transition registry, assessing and tracking transition readiness, address- ing healthcare transition needs with the youth and family, ensuring direct communication between pediatric and adult providers during any transfer of care, and continuing con- tact with the young adult to ensure successful completion of the transition (Got Transition, 2020). With financial limita- tions sometimes posing barriers to transition support, Got Transition and the American Academy of Pediatrics (AAP) developed a transition payment tip sheet that is updated annually and assists providers with achieving greater reim- bursement for improved transition planning and utility

(McManus et al., 2021). 1. Transition Policy

• The practice or institution should reference the annu- ally updated transition payment tip sheet to support the delivery of recommended transition services (McManus et al., 2021). • Formal discussion about transition should begin at age 12 (or when the patient is developmentally ready) and should include both the patient and the patient’s family (Porter et al., 2014).