title: Patient-centered approach to designing sickle cell transition education.
abstract: BACKGROUND
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: *Division of Pediatric Hematology Oncology †Lister Hill Library of Health Sciences, University of Alabama at Birmingham, Birmingham, AL.
authors.forename: Courtney P
authors.initials: CP
authors.lastname: Williams
authors.forename: Catherine H
authors.initials: CH
authors.lastname: Smith
authors.forename: Kristen
authors.initials: K
authors.lastname: Osborn
authors.forename: Christina J
authors.initials: CJ
authors.lastname: Bemrich-Stolz
authors.forename: Lee M
authors.initials: LM
authors.lastname: Hilliard
authors.forename: Thomas H
authors.initials: TH
authors.lastname: Howard
authors.forename: Jeffrey D
authors.initials: JD
authors.lastname: Lebensburger
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000628:therapy*; D002648:Child; D003695:Delivery of Health Care; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010353:Patient Education as Topic / Q000379:methods*; D018802:Patient-Centered Care; D060305:Transition to Adult Care