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Updated: Apr 8, 2026
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Transition Needs of Adolescents With Sickle Cell Disease
Regina A Abel1, Esther Cho2, Kelley R Chadwick-Mansker3
1Regina A. Abel, PhD, is Staff Scientist, Child Health and Education Laboratory, Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO.
Objective:
This article describes how adolescents with sickle cell disease (SCD) perceive their ability to perform everyday tasks required for transition to adult health care and independent living.
Method:
The Adolescent Autonomy Checklist (AAC) was adapted to include skills associated with managing SCD (AAC-SCD) and was administered to adolescents during clinic visits. Participants indicated "can do already" or "needs practice" for 100 activities in 12 categories.
Results:
Of 122 patients, the percentage of adolescents who needed practice was greatest in living arrangements (38.7%), money management (35.8%), vocational skills (29.6%), and health care skills (25.5%). We found a significant effect of age and of cerebrovascular injury on the percentage of those who reported "needs practice" in multiple categories. We found no effect of gender and limited effect of hemoglobin phenotype on any skill category.
Conclusion:
Findings support the need for educational intervention to improve transition skills in adolescents with SCD.
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