Patient-centered approach to designing sickle cell transition education.

ABSTRACT

INTRODUCTION: It is vital to engage patients with sickle cell disease (SCD) in the transition process from pediatric to adult care. To better understand the patient perspective during the time of transition, we conducted this research with the goal of incorporating patient comprehension and desires for transition education. MATERIALS AND METHODS: We surveyed 37 adolescent patients with SCD about their understanding of SCD and transition education preferences. In addition, patient responses were analyzed to understand differences among urban and rural patients. RESULTS: The mean age of surveyed participants was 14.9 years (SD=2.1). Forty-three percent of participants responded that the topic of transition had been introduced to them, and only 21% responded that they received education about transition. Despite the poor awareness about transition, almost all participants were interested in learning more about the transition process through a technology-based transition education platform where individual health topics could be explored. DISCUSSION: Despite a didactic teaching approach to transition education, we identified that sickle cell participants had poor recognition of receiving transition education and poor understanding of their basic medical history. However, patients can identify specific health topics that should be addressed during an individualized transition education program.