JMIR Publications

ABSTRACT

Background:

Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease-specific literacy and self-management skills, prior to transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (S.T.E.P.) is a public, web-based, 6-module tool designed to increase transition readiness for youth with SCD.

Objective:

The objectives of our study were to investigate the participation rate of youth with SCD in S.T.E.P. and its association with transition readiness.

Methods:

This was a single-center, IRB-approved retrospective cohort review. One hundred and eighty-three youth with SCD, ages 12 to 15 years, were offered S.T.E.P. as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one S.T.E.P. module divided by those approached) was calculated. The association between the number of S.T.E.P. modules completed, and disease-specific knowledge and self-management were explored.

Results:

Fifty-three of the 183 approached adolescents completed at least one S.T.E.P. module, yielding a participation rate in S.T.E.P of 29%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating, respectively. A positive correlation (r=0.47) was found between number of S.T.E.P. modules completed and disease-specific knowledge scores (p=0.003). No association was found between number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 versus <3 S.T.E.P. modules (U=149.00, p=0.007).

Conclusions:

Improvement in disease-specific knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. The cumulative exposure to the S.T.E.P. program suggested greater promotion of disease-specific literacy among adolescents with SCD prior to transfer to adult care.