Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study

Abstract

Background Advancements 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. Objective The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. Methods This 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. Results Overall, 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). Conclusions Improvement 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.

A scoping review of transition interventions for young adults with sickle cell disease

“…Eleven pre/post single-arm studies were identified. Of these, four were primarily designed to assess feasibility of web modules, 29 virtual mentoring, 30 genetic education sessions, 31 and online patient portal. 32 Six studies assessed the impact of transition programs on psychosocial outcomes (self-efficacy, disease knowledge, transition readiness), [33][34][35][36][37][38] and one study looked at rate of transfer as a primary outcome.…”

“…Only two studies reported completion rates, making it hard to compare rates of program completion among modalities. Four studies (one web-based and two in person) demonstrated improvements in disease knowledge postintervention, 29,[36][37][38] a program that utilized take-home worksheets demonstrated significant improvements in skill-building, 34 and a 6-month transition navigator program increased transition readiness among participants. 36…”

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

“…However, engagement or adherence metrics for these interventions were reported in only a few studies. Among 4 recent studies [ 34 - 36 ] that reported some engagement data, operational definitions varied, making direct comparisons difficult. First, Palermo et al reported high engagement with web-based management of adolescent pain (WebMAP), an internet-delivered cognitive-behavioral therapy intervention tailored for SCD [ 27 ].…”

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

“…Local institutions have varied practices, resources, and readiness for transition program implementation. Previous efforts in improving transition programs have been focusing on patient education to build patient transition preparedness 28,29. A scoping review of transition interventions for young adults with SCD identified over 20 published articles, the majority of which focus on improving patients’ skills and disease knowledge 30.…”