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Self-reported Transition Readiness Among Young Adults With Sickle Cell Disease

Sobota, Amy MD, MPH; Akinlonu, Adeola MD, MPH; Champigny, Maria LICSW; Eldridge, Megan LICSW; McMahon, Lillian MD; Telfair, Joseph DrPH, MSW, MPH; Sprinz, Philippa MD, MSc

Journal of Pediatric Hematology/Oncology: July 2014 - Volume 36 - Issue 5 - p 389–394
doi: 10.1097/MPH.0000000000000110
Original Articles

Background: A 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.

Objective: To 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).

Results: Of 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.

Conclusions: Adolescents 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.

*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

The work of A.A. on this project was supported by a grant from the Inavale Foundation. The other authors declare no conflict of interest.

Reprints: Amy Sobota, MD, MPH, 850 Harrison Avenue, Yawkey Building, ACC 4S-11, Boston, MA 02118 (e-mail:

Received June 28, 2013

Accepted January 6, 2014

Copyright © 2014 Wolters Kluwer Health, Inc. All rights reserved.