Applying a developmental–ecological framework to sickle cell disease transition.

Abstract

Transitioning from pediatric to adult care is a challenging process for adolescents with sickle cell disease (SCD). There is a critical need for well-designed and practically adaptable SCD transition programs that are compatible within the social and cultural context of the individual. The purpose of this article is to outline the design of a theoretically informed intervention to facilitate successful transition for adolescents and young adults (AYAs) diagnosed with SCD. The authors propose and describe the use of a developmental-ecological framework in creating and implementing the Sickle Cell Disease-Age Based Curriculum for Transition (SCD-ABC). The SCD-ABC Transition program's framework begins at birth with the parent-caregiver and spans throughout a child's development into young adulthood. This program involves a multidisciplinary team approach with collaboration from pediatric and adult medical providers, family and peers, social services, the community, and adult mentors living with SCD. The goal of this program was to foster increased disease knowledge and self-efficacy for AYAs

A scoping review of transition interventions for young adults with sickle cell disease

“…Of these, four were primarily designed to assess feasibility of web modules, 29 virtual mentoring, 30 genetic education sessions, 31 and online patient portal. 32 Six studies assessed the impact of transition programs on psychosocial outcomes (self-efficacy, disease knowledge, transition readiness), [33][34][35][36][37][38] and one study looked at rate of transfer as a primary outcome. 39 Among the studies designed to test feasibility, four assessed the feasibility of electronic or mobile health-based programs, while the other two programs were conducted in person.…”

The Teen Symposium: Engaging adolescents and young adults with sickle cell disease in clinical care and research.

“…Several studies have reported that youth with SCD may feel isolated, and therefore, allowing youth to meet and talk with others about their experiences may have therapeutic and social value (Weisberg, Balf-Soran, Becker, Brown, & Sledge, 2013). This may be especially true for AYA as they approach the transition to adult care (Griffin et al, 2013; Treadwell, Telfair, Gibson, Johnson, & Osunkwo, 2011). Last, the event allows participants to take part in recognition and research opportunities that promote motivation, self-efficacy, and a sense of feeling empowered.…”

The Kennedy Krieger Independence Scales-Sickle Cell Disease: Executive components of transition readiness.

“…However, there is little agreement regarding how best to transition a population with cognitive difficulties, atypical self-management demands, and unique psychosocial needs. Previously, the roles of psychosocial, demographic, and disease-related variables have been highlighted (e.g., Griffin et al, 2013). In the current study, self-management skills were more strongly correlated with caregiver-report of executive behaviors than with intellectual functioning, demographic factors, illness severity, or age.…”