Measuring Transition Readiness in Adolescents and Young Adults with
Sickle Cell Disease Using the Transition Readiness Assessment
Questionnaire
Abstract
Background/Objectives: Adolescents and young adults (AYA) with sickle
cell disease (SCD) face challenges related to the disease and its
treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a
self-report tool for assessing transition readiness for youth with
special health care needs (YSHCN), including SCD. This study uses the
TRAQ to understand transition readiness in patients with SCD treated at
the Boston Medical Center, evaluates associations between TRAQ scores
and transition outcomes (e.g., EDr, EDu), and compares TRAQ scores in
this population with other YSHCN. Methods: We reviewed electronic
medical records of AYA with SCD who completed the TRAQ in the pediatric
hematology clinic between January 1, 2019, and March 1, 2020, and
categorized healthcare encounters to calculate EDu and EDr. We used
t-tests and ANOVA models to analyze mean TRAQ scores, sex, age,
genotype, EDu, and EDr. Results: The sample was 45 AYA patients with SCD
between 13 and 22 years old. The mean TRAQ score for the overall patient
sample was 3.67. Mean TRAQ scores did not significantly vary by sex or
genotype but did significantly increase with age. TRAQ scores were lower
in the SCD population than in other YSHCN. TRAQ scores did not correlate
to EDu or EDr. Conclusions: AYA patients with SCD have lower transition
readiness than other populations of YSHCN. The age of 18 may not be the
most reliable attribute of readiness, though older patients do have
higher readiness. The relationship between TRAQ scores, EDr, and EDu is
not clear and requires further evaluation.