• J. Pediatr. Hematol. Oncol. · Jul 2014

    Self-reported transition readiness among young adults with sickle cell disease.

    • Amy Sobota, Adeola Akinlonu, Maria Champigny, Megan Eldridge, Lillian McMahon, Joseph Telfair, and Philippa Sprinz.
    • *Boston University School of Medicine Departments of †Pediatrics ∥Medicine, Boston Medical Center, Boston §The Brien Center, Pittsfield, MA ‡The Brooklyn Hospital Center, Brooklyn, NY ¶Georgia Southern University, Statesboro, GA.
    • J. Pediatr. Hematol. Oncol. 2014 Jul 1; 36 (5): 389-94.

    BackgroundA growing body of literature addresses the need for transition programs for young adults with sickle cell disease (SCD); however, studies assessing transition readiness are limited and there are few validated instruments to use.ObjectiveTo conduct a pilot study to assess transition readiness of patients with SCD in our transition program and to evaluate a SCD-specific assessment tool that measures 5 knowledge skill sets (medical, educational/vocational, health benefits, social, and independent living), and 3 psychological assessments (feelings, stress, and self-efficacy).ResultsOf the 47 SCD patients between the ages of 18 and 22 seen in our facility, 33 completed the assessment tool. The majority of patients reported good medical knowledge of SCD and said they were motivated to pursue a career despite the burden of living with the disease. We identified knowledge gaps in the area of independent living and health benefits skills sets. A majority of patients reported being worried that their SCD would prevent them from doing things in their life; however, few respondents said they were worried or anxious about their transition to adult care.ConclusionsAdolescents beginning a transition intervention program reported a high level of knowledge of their disease and demonstrated a positive attitude toward transition with good self-efficacy.

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