TABLE 1.

Summary of Transition Research

AuthorSiteSampleDiagnosis/ParticipantsDesignResult
Anderson et al16US, Europe, Australia334, 25.9% response rateCF/members of International Association of Cystic Fibrosis AdultsMailed surveyAge was predominate factor for transfer to adult centers. Result demonstrated a lack of transition program for most adults with CF. Young adults voiced less concerns about transfer than their parents and directors of pediatric CF centers.
Flume et al15US110 pediatric program directors, 65.5% response rate; 44 adult program directors, 72.7% response rateCF/program directors of CF centersMailed surveyAge was used as a primary factor in transferring to adult care. Transfer was not introduced until quite late, and many families did not meet adult provider until first adult visit. Pediatric directors perceived more difficulty with transition than adult directors.
Hauser and Dorn13USPurposive sampling A = 12 PC = 12 P = 8Adolescents with SCD aged 13–21, parents and practitioners9 focus groups/interviewsConcerns about leaving familiar settings, going to providers who may not be familiar with SCD, and establishing new family roles.
Pacaud et al11CanadaYA = 135, 36% response rateDiabetes/patients transferred to adult care from 2 pediatric hospitalsMailed survey50% had difficulty with transition, differences noted between pediatric and adult care
Patterson and Lanier14USNominated sample total 7Adolescents and young adults with disability3 focus groups3 themes: barriers, supports, and strategies
Scal et al9USNominated sample of transition programs, 155 programs with a response rate of 46%All/nominated sample of programs that provide HCT services to youths and adolescentsMailed surveyObserved 2 models of organization: adolescent and condition focus. Barriers to transition: funding, access to adult providers. Family and adolescent resistance rarely reported.
Telfair et al8USA = 36 YA = 60 C = 25SCD/patients in a comprehensive sickle cell programCross-sectional survey/interview and mailed surveyConsensus from all groups regarding concerns about leaving pediatric care and need for transition programs
Westwood et al12South AfricaA = 13 PC = 21 YA = 8 PA = 5 77% response rateCF/patients in a pediatric program and their parents and patients in an adult program and their parentsCross-sectional mailed survey80% of the respondents unsure of transition, and 90% believed that a transition clinic would be helpful.
Wojciechowski et al10USConvenience sample of 18SCD/18- to 24-year-olds transferred to adult SCD care within the past 3 y of study’s initiationStructured interview, face to face or telephoneYoung adults with SCD receive little preparation for transition, follow-up care in adulthood diminishes, and transition often based on age
  • A indicates adolescent; PC, parents of children; P, practitioner; YA, young adult; C, caregiver; PA, parents of adults.