Transition Position Paper

ASSOCIATIONS’ POSITION

with SCD from pediatric to adult care begins early and is pre- sented as part of the natural process of becoming an adult; that patients, providers, and families are all involved in cre- ating a transition plan and assessing transition preparedness annually; that the transfer of care involves direct communi- cation between the pediatric team and the adult providers accepting the patient; and that adult services focus on help- ing young adults integrate into the adult model of care .

Transition in health care involves the process of chang- ing from a pediatric-focused to an adult-focused model of care, whether with or without transfer of the patient from a pediatric care provider to an adult care provider, and this is especially important for patients who have sickle cell disease (SCD). As the professional voices of pediatric hematology/ oncology healthcare practice, the Association of Pediatric Hematology/Oncology Nurses (APHON) and the American Society of Pediatric Hematology/Oncology (ASPHO) recom- mend the following: that the process of transitioning patients

BACKGROUND AND SIGNIFICANCE

Transition support goes beyond the coordination of transfer between different locations or levels of care; it encompasses support for the patient’s self-management and assistance with reaching educational and vocational milestones. It is essential to realize the significant differences between pedi- atric-driven care and adult-driven care and their effect on overall medical management. According to Castillo and Kitsos (2017), “pediatric care is family-oriented and relies on significant parental involvement in decision making; how- ever, adult care is patient-specific and requires autonomous, independent skills of patients without many interdisciplinary resources.” The pediatric-driven care dynamic nonetheless plays a major role in how patients are able to face transition. A separate obstacle during transition is the heightened risk of the loss of insurance coverage, which can contribute to worse health outcomes (Sawicki et al., 2017). Adolescents and young adults with SCD may face addi- tional barriers during transition because of the disease’s cerebrovascular complications, which can include stroke, silent cerebral infarctions, and cognitive impairment (Strouse, 2016). In some cases, patients with developmental delay may require decision-making support from a third party through guardianship or a power of attorney (White et al., 2018). It is incumbent upon the pediatric team to introduce a dialogue about transition early and identify and address any barri- ers before the transfer of care occurs. This dialogue should include encouraging the patient to self-advocate and high- lighting the need to practice autonomy in care practices. Providers should aim to equip patients with realistic expecta- tions about the level of support that they are likely to find in the adult healthcare setting.

Sickle cell disease (SCD) refers to a group of inherited blood disorders that affect approximately 100,000 individuals in the United States and millions worldwide at any given time (Hassell, 2010; Sedrak & Kondamudi, 2020; Wastnedge et al., 2018). Complications of SCD result from hemolysis and vaso-occlusion, which cause acute and chronic multisystem complications that lead to significant morbidity and mor- tality (National Heart, Lung, and Blood Institute [NHLBI], 2014a). With improved medical interventions such as uni- versal newborn screening, prophylactic antibiotics, targeted immunizations, and optimization of hydroxyurea (Lanzkron et al., 2013), childhood mortality has declined, and more than 90% of children with SCD in the United States now survive to adulthood (Quinn et al., 2010). Despite these advances, little improvement has been seen in outcomes for adults with SCD (Lanzkron et al., 2013). The time of transition between pediatric and adult care is a high-risk period, with increased rates for utilization of acute care, reduced access to preventative maintenance, and risk of early mortality (Blinder et al., 2013; Hemker et al., 2011). Factors contributing to these poor outcomes include the lack of continuity of care, disease-specific comorbidities such as cognitive impairment due to cerebrovascular complica- tions, and psychosocial vulnerabilities inherent in adolescent development (Crosby et al., 2015). Systems in which care is provided to adolescents and young adults (AYAs) with SCD must provide structured transition support for this vulnerable population. This position paper addresses the transition of care from a pediatric-oriented healthcare system to an adult-oriented healthcare system, with or without a change in provider.