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Integrating interactive web-based technology to assess adherence and clinical outcomes in pediatric sickle cell
Lori E Crosby1, Ilana Barach, Meghan E McGrady
1College of Medicine, University of Cincinnati, Cincinnati, OH 45221, USA.
Insights
A new web-based tool effectively assessed adherence to clinic visits and hydroxyurea in pediatric sickle cell disease patients. The technology improved adherence assessment and patient satisfaction, offering innovative solutions for managing chronic conditions.
Area of Science:
- Pediatric Hematology
- Digital Health Interventions
- Chronic Disease Management
Background:
- Adherence assessment quality significantly impacts clinical outcomes.
- Newer technologies offer potential for standardized adherence assessments.
- Systematic testing of such tools is lacking in pediatric sickle cell disease (SCD).
Purpose of the Study:
- To pilot an interactive web-based tool, the Take-Charge Program.
- To assess adherence to clinic visits and hydroxyurea (HU) in pediatric SCD patients.
- To identify barriers, solutions, and clinical outcomes related to adherence.
Main Methods:
- Piloted an interactive web-based tool with 43 pediatric SCD patients (ages 6-21).
- Assessed adherence to clinic visits and HU, barriers, solutions, and clinical outcomes.
- Collected data via the web tool and compared with medical records and staff reports.
Main Results:
- The web-based tool was successfully integrated into clinical practice with >90% patient satisfaction.
- Data from the tool aligned with medical records and clinical lab data.
- Forgetting and transportation were identified as major adherence barriers; more barriers and older age correlated with poorer adherence.
Conclusions:
- The Take-Charge Program demonstrates an innovative technological approach for assessing adherence in pediatric SCD.
- The tool supports high patient satisfaction and provides reliable adherence data.
- Addressing identified barriers is crucial for improving adherence and clinical outcomes in pediatric SCD.
Abstract:
Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6-21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.
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