Utilization of Digital Applications to Support Provision of Comprehensive Sickle Cell Disease Management

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Introduction: Sickle cell disease (SCD) affects millions of people worldwide, with nearly 80% of the global burden incurred in sub-Saharan Africa (SSA) (GBD 2021 SCD collaborators. Lancet Haematol 2023). As part of a public-private partnership to address SCD in Ghana, a multi-faceted health systems strengthening program was implemented that included novel digital applications (‘Apps‘) to support newborn screening (NBS) data management and clinical use of hydroxyurea (HU). The Apps were designed according to inputs received by clinicians (physicians, nurses, and pharmacists) and patients in Ghana to address local needs and were engineered by an mHealth company (Dimagi) that specializes in customizable digital tools for use in low-resource settings. Aim: This analysis evaluated utilization, benefits, and challenges associated with NBS and HU management Apps among healthcare workers in Ghana. Methods: This evaluation is part of a mixed-method monitoring and evaluation (M&E) study involving quantitative and qualitative research designs (Moore et al. BMJ 2015). Healthcare professionals (HCPs) who used the Apps were interviewed. Questionnaires and tools were used to assess satisfaction, challenges, relevance, ease of use, and other relevant parameters for both Apps using a 5-point Likert scale (with “5” corresponding to the most positive assessment). The efficiency and impact of the Apps were determined using indicators such as time spent with patients, patients' length of stay at healthcare centers, time/effort of result distribution and tracking, and more. Data were analyzed using appropriate statistical methods. Results: Overall, 57 in-depth interviews of HCPs (physicians, 13; nurses, 31; pharmacists, 7; lab technicians, 6) were conducted. Their mean (range) age was 36.4 (24-55) years, and on average they worked for 4 years in the SCD units. Nearly half of the HCPs interviewed had heard about the NBS App, 7% were trained to use it, and <5% were actively using it at the time of the survey; 52% had heard about the HU management App, of which 63% were trained to use it and 65% used it. Using the NBS App allowed for data aggregation and direct communication among personnel across birth centers, laboratories, regional program coordinating centers, and SCD counsellors. Users of the NBS App felt strongly (mean score, 4.4) that the App was useful for their healthcare practice and helped HCPs to manage their patient's health effectively. Additional observed benefits of the NBS App included the timely availability of screening results facilitating informed decision-making for both HCPs and parents and easy access, transfer, and retrieval of records. The mean scores for both Apps were nearly 4.0 or higher for ease of learning to use the App, improved ability to deliver healthcare services, and improved communication/interaction with patients. Reported challenges included an extended data entry process (for the HU management App), limited duration of data storage, and difficulties in synchronizing data during poor internet connectivity. Nonetheless, most HCPs expressed acceptance of the Apps and highlighted their ease of use. Conclusion: Digital Apps were reported to be user-friendly and associated with improved efficiencies compared with traditional paper-based chart records. Continued inclusion of these Apps as part of routine clinical care processes in Ghana may help to support optimized patient management. Of note, use of the NBS App is currently being expanded to multiple countries in Africa through a consortium organized through the American Society of Hematology.

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