ArticleJMIR pediatrics and parenting2020
Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study.
Article in JMIR pediatrics and parenting, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
10 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Usability and Effectiveness of eHealth and mHealth Interventions That Support Self-Management and Health Care Transition in Adolescents and Young Adults With Chronic Disease: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Self-management interventions for children and young people with sickle cell disease: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2023Pooled it
- Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial.Journal of medical Internet research · 2022Trial
- Effectiveness of health care transition interventions for sickle cell disease.Blood advances · 2026Article
- Mechanism-informed transition from pediatric to adult care in sickle cell disease: a case study.BMC health services research · 2026Article
- Health self-management programs for adolescents and young adults with chronic medical condition transitioning from pediatric to adult care: a scoping review.European journal of pediatrics · 2025Article
- Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.Journal of pediatric hematology/oncology · 2022Article
- A scoping review of transition interventions for young adults with sickle cell disease.Pediatric blood & cancer · 2021Article
- Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families.Translational behavioral medicine · 2021Article
- Impact of COVID-19 pandemic on access to online therapeutic education programs for children with sickle cell disease.Journal of pediatric nursingArticle
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundAdvancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD.
objectiveThe objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness.
methodsThis was a single-center, Institution Review Board-approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored.
resultsOverall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (r=0.47) was found between the number of STEP modules completed and disease knowledge scores (P=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed <3 STEP modules (U=149.00; P=.007).
conclusionsImprovement in disease knowledge in adolescence is critical to ensure the youth's ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.
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