A transition pilot program for adolescents with sickle cell disease

J Pediatr Health Care. Nov-Dec 2012;26(6):e45-9. doi: 10.1016/j.pedhc.2012.06.004. Epub 2012 Jul 19.


Introduction: Transition from pediatric to adult care is challenging for adolescents with chronic illnesses, including those with sickle cell disease (SCD). We describe a pilot program created to facilitate transition from pediatric to adult care by helping adolescents with SCD identify an adult medical home.

Methods: We investigated the feasibility of this program by evaluation of overall participation, satisfaction, and acceptance. A secondary objective was to compare the proportion of adolescents who fulfilled a first appointment with an adult hematologist among participants and nonparticipants.

Results: During the first 18 months of the program, 83 adolescents were invited and 34 (41%) agreed to participate; 25 (74%) completed their first visit within 3 months after leaving the pediatric program, compared with 16 of 49 (33%) of nonparticipants (p = .0002). Overall, 41 of 83 adolescents (49%) completed an appointment with an adult SCD program, regardless of program participation, in contrast with 11 of 75 adolescents (15%) who did so during the 18 months before the program was created (p < .0001).

Discussion: This transition pilot program was feasible, and most adolescent participants with SCD established an adult medical home.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adolescent Health Services / organization & administration*
  • Adolescent Health Services / standards
  • Anemia, Sickle Cell / epidemiology
  • Anemia, Sickle Cell / therapy*
  • Continuity of Patient Care / organization & administration*
  • Continuity of Patient Care / standards
  • Female
  • Humans
  • Male
  • Patient Acceptance of Health Care / statistics & numerical data*
  • Patient Satisfaction
  • Personal Autonomy
  • Pilot Projects
  • Program Evaluation
  • Quality of Health Care
  • Tennessee / epidemiology
  • Transition to Adult Care / organization & administration*
  • Transition to Adult Care / standards