A Digital Patient Engagement and Monitoring System to Improve Quality, Safety, and Continuity of Care for Pediatric Sickle Cell Anemia: A Cross-Sectional Study of Caregiver Perceptions

TL;DR

This study shows that caregivers of children with sickle cell anemia are highly supportive of using digital tools to improve care management and communication.

Contribution

The study provides empirical evidence of caregiver readiness and perceived usefulness of a digital system for pediatric sickle cell anemia management.

Findings

Most caregivers (86.1%) found digital tools useful for managing their child's care.

Over 90% of caregivers expressed readiness to use digital platforms for health data management.

Thematic analysis revealed key desired features like automated reminders and access to lab results.

Abstract

Introduction

The management of chronic conditions like sickle cell anemia (SCA) requires high levels of patient and caregiver engagement to ensure adherence to treatment and prevent complications. Digital health interventions offer a promising avenue to support this engagement. This study evaluates the awareness, perceived usefulness, and readiness of caregivers to adopt a digital patient engagement and monitoring system for pediatric SCA management.

Methods

A cross-sectional survey was conducted using a structured Arabic-language questionnaire administered to 165 primary caregivers of children with SCA. The instrument included closed-ended Likert-scale items on current care challenges and digital readiness, alongside open-ended questions for qualitative insights. Quantitative data were analyzed descriptively with 95% confidence intervals, and qualitative responses underwent thematic analysis.

Results

Participants were predominantly parents (95.7%) and well educated (84.2% secondary or university graduates). Although 74.5% reported that clinic information was sufficient, adherence challenges remained: 44.2% sometimes and 11.5% frequently forgot appointments or medications, while 41.2% reported at least one missed event within six months. Perceptions toward digital tools were highly favourable: 86.1% (95% CI 80.2-90.5) endorsed their usefulness, 92.1% (95% CI 87.0-95.4) expressed readiness to use them, and 89.7% (95% CI 84.6-93.8) trusted digital platforms to manage health data. Nearly all respondents (97%) welcomed mobile notifications. Thematic analysis (n = 105 comments) identified four dominant needs: automated reminders (31%), emergency guidance (28%), improved communication (22%), and access to laboratory results (24%).

Conclusion

Caregivers of children with SCA demonstrate high readiness and a strong positive perception toward a digital engagement system. Such a system is well-positioned to address critical gaps in adherence and communication, thereby potentially improving the quality, safety, and continuity of care. The alignment between desired features and the system's design suggests high potential for successful implementation and impact.

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