title: Adolescents with sickle cell disease in a rural community: are they ready to transition to adulthood?
abstract: OBJECTIVE
  Most patients with sickle cell disease (SCD) survive to adulthood; however, young adults with SCD have high rates of morbidity and mortality and may struggle in the transition to a healthy adulthood. The purpose of this study was to determine the readiness of a rural SCD population for the transition to adulthood and adult medical care.
  
  
  METHODS
  Adolescents and young adults who were current/former patients of a rural pediatric practice were surveyed. Assessments included difficulty dealing with daily care issues and perceived/encountered barriers to transition. Adolescents were asked if a doctor had discussed transition to adult care. Young adults also were asked about satisfaction with their transition experience and about the utility and composition of a transition program.
  
  
  RESULTS
  Surveys were completed by 13 adolescents and 5 young adults. Adolescents reported difficulty leaving their pediatrician (62%) and knowing how SCD differs from other types of anemia (54%). They had concerns about finding an adult doctor (54%), arranging transportation (54%), preparing to use an adult hospital (46%), and handling financial issues (46%). Two-thirds had not discussed or did not know whether their doctor had discussed transitions. Young adults described difficulty leaving their pediatrician (100%), finding an adult doctor (80%), keeping a job (60%), knowing what to expect (40%), and knowing how to pay for medical care (40%). Two-thirds were not satisfied with their transition and all believed a transition program would be helpful. Services suggested for a transition program to provide included information about adult providers/adult healthcare services, ways to take control of one's own care, and helping adult providers understand more about SCD.
  
  
  CONCLUSIONS
  Adolescents with SCD in a rural community identify potential barriers in the transition to adult health care. Several barriers mirror what young adults report encountering. A rural SCD transition clinic can provide individualized preparation to promote a successful transition to adulthood.
authors.affiliation: From the Department of Pediatrics, Medical University of South Carolina, and the South Carolina Pediatric Practice Based Research Network, Charleston.
authors.forename: Sarah
authors.initials: S
authors.lastname: Mennito
authors.affiliation: From the Department of Pediatrics, Medical University of South Carolina, and the South Carolina Pediatric Practice Based Research Network, Charleston.
authors.forename: Paul
authors.initials: P
authors.lastname: Hletko
authors.affiliation: From the Department of Pediatrics, Medical University of South Carolina, and the South Carolina Pediatric Practice Based Research Network, Charleston.
authors.forename: Myla
authors.initials: M
authors.lastname: Ebeling
authors.affiliation: From the Department of Pediatrics, Medical University of South Carolina, and the South Carolina Pediatric Practice Based Research Network, Charleston.
authors.forename: Lee Ann
authors.initials: LA
authors.lastname: Amann
authors.affiliation: From the Department of Pediatrics, Medical University of South Carolina, and the South Carolina Pediatric Practice Based Research Network, Charleston.
authors.forename: James
authors.initials: J
authors.lastname: Roberts
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000755:Anemia, Sickle Cell / Q000523:psychology* / Q000628:therapy*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D006306:Health Surveys; D006801:Humans; D008297:Male; D010342:Patient Acceptance of Health Care; D019035:Rural Health Services; D012959:Socioeconomic Factors; D060305:Transition to Adult Care; D055815:Young Adult