Development and Evaluation of an Information Management and Communication System for Population-wide Point-of-Care Infant Sickle Cell Disease Screening.

用于全人群护理点婴儿镰状细胞病筛查的信息管理和通信系统的开发和评估。

• 批准号: 10269058
• 负责人: Joseph Lubega
• 金额: $ 16.01万
• 依托单位: MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-16 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10269058
• 关键词: Adolescence; Adopted; Adoption; Adult; Affect; Africa; African; Algorithms; Android; Biological Assay; Caring; Cellular Phone; Cessation of life; Child; Childhood; Chronic; Cities; Clinical; Cluster randomized trial; Communication; Communities; Complex; Computer software; Continuity of Patient Care; Counseling; Country; Custom; Data; Demographic and Health Surveys; Development; Diagnosis; Disease; Early Diagnosis; Education; Erythrocytes; Evaluation; Event; Family; Feedback; Fostering; Goals; Health; Health Sciences; Health Status; Health education; Health system; Hemolytic Anemia; Hospital Referrals; Income; Individual; Infant; Infant Care; Informatics; Information Management; Infrastructure; Inherited; Intervention; Level of Evidence; Life; Logistics; Maintenance; Mission; Morbidity - disease rate; Operating System; Organ; Outcome; Outcomes Research; Pain; Patient Education; Patients; Pediatric Hematology; Phase; Policies; Population; Pre-Post Tests; Prevention; Process; Program Evaluation; Provider; Reproducibility; Research; Research Infrastructure; Resources; Rural; Rural Community; Sahara; Sampling; Sickle Cell; Sickle Cell Anemia; Site; Software Design; Specialist; Standardization; System; Test Result; Testing; Text Messaging; Time; Transportation; Uganda; United States National Institutes of Health; Universities; Vaccination; base; care coordination; care outcomes; care providers; clinical care; college; community based participatory research; community based research; cost; data centers; data management; design; digital; digital health; disability; disorder control; evidence base; experience; feasibility testing; health care service; hydroxyurea; improved; improved outcome; innovation; low and middle-income countries; mHealth; mortality; multidisciplinary; novel; point of care; programs; public health relevance; scale up; screening; screening program; screening services; smartphone Application; transmission process

Project Summary Although over 75% of children with sickle cell disease (SCD) are born in sub-Sahara where the disease highly contributes to under-5 mortality and causes life-long debilitation, evidence-based strategies to control SCD are not widely implemented in this region. Early detection of SCD by universal infant screening is a pillar of SCD control. Despite the affordability and move to adopt point-of-care (POC) SCD screening assays in sub-Sahara Africa, the absence of screening information management and communication systems (SIMCS) impedes standardized, systematic, coordinated, nationwide SCD screening programs. The long-term goal of the proposed research is to develop a SCD SIMCS that will enable universal SCD screening in the sub-Sahara African setting. The objective is to test and optimize a custom SCD SIMCS app and digital network to facilitate SCD screening and then evaluate its impact on access to SCD screening and care and on clinical outcomes of children with SCD in Uganda. The central hypothesis is that the SCD SIMCS will facilitate accurate and coordinated POC SCD screening that is accessible at health centers in urban and rural Uganda. The rationale is to build a custom SCD SIMCS on existing nationwide digital and health infrastructure in Uganda to standardize use of the affordable HemoTypeSCTM POC assay at health centers nationwide. The central hypothesis will be tested by pursuing two specific aims: 1) Develop and evaluate a four-module ≥3G cell phone app for a novel SCD SIMCS (R21 Phase); 2) Evaluate the impact of the SCD SIMCS on access to screening and care and outcomes of children with SCD (R33 Phase). We will pursue these aims using an innovative combination of software design and re-organization of SCD screening workflows. These include assembly of off-the-shelf software that is compatible with iOS and Android operating systems to reliably, accurately, and handily capture, interpret, transmit, and retrieve/playback information for patient’s IDs, test results, salient clinical events, and education. The novel screening workflows are expected to dramatically reduce the cost and increase access to SCD screening and care. The proposed research is significant, because it will determine how to use POC SCD screening assays on a large nationwide scale. It will also enable coordination of evidence-based care and continuity of care between primary and specialist providers and longitudinally over the patient’s lifetime – a critical aspect in controlling this life-long disease. The SCD SIMCS will also facilitate real time data management for research and policy for SCD control. The expected immediate outcome of this research is a SCD SIMCS that optimally functions on the digital and health infrastructure in Uganda and demonstration of its impact on access to SCD screening and care and on clinical outcomes of children with SCD. The expected long-term outcome is that the SCD SIMCS will be adopted, integrated, and scaled-up in the health systems of Uganda and other sub-Sahara Africa countries, particularly those where the HemoTypeSCTM has already been adopted as the national standard of SCD screening. If effective, the SCD SIMCS will have an important positive impact because it will reduce the cost of SCD screening, take screening services and evidence-based care closer to rural communities where the majority of children in sub-Sahara Africa live, and, ultimately, save millions of children from preventable and disability death.

项目摘要 尽管超过75%患有镰状细胞病(SCD)的儿童出生在撒哈拉以南地区，那里的疾病对儿童的影响很大 对于5岁以下儿童的死亡率并导致终生虚弱，控制SCD的循证策略并不广泛 在这一地区实施。通过普遍的婴儿筛查及早发现SCD是控制SCD的支柱。尽管 在撒哈拉以南非洲地区采用护理点(POC)SCD筛查分析的可负担性和行动，缺乏筛查 信息管理和通信系统(SIMC)阻碍了标准化、系统性、协调性、 全国范围内的SCD筛查计划。拟议研究的长期目标是开发一种SCD SIMCS，它将 在撒哈拉以南非洲地区启用普遍的慢性阻塞性肺病筛查。目标是测试和优化自定义SCD SIMCS应用程序和数字网络，以促进SCD筛查，然后评估其对获得SCD筛查和 关于乌干达SCD儿童的护理和临床转归。中心假设是SCD SIMC将 促进准确和协调的POC SCD筛查，可在乌干达城市和农村的卫生中心获得。这个 基本原理是在乌干达现有的全国性数字和医疗基础设施上建立一个定制的SCD SIMC，以 在全国卫生中心标准化使用负担得起的HemoTypeSCTM POC检测。中心假说将 通过追求两个具体目标进行测试：1)开发和评估适用于新型SCD的四模块≥3G手机应用程序 SIMCs(R21阶段)；2)评价SCD SIMCs对获得筛查和护理的机会以及儿童结局的影响 SCD(R33期)。我们将通过软件设计和重组的创新组合来实现这些目标 SCD筛查工作流程。其中包括组装与iOS和Android兼容的现成软件 可靠、准确、方便地捕获、解释、传输和检索/回放信息的操作系统 患者的ID、检查结果、显著的临床事件和教育。新的筛选工作流程预计将 大幅降低成本并增加获得SCD筛查和护理的机会。这项拟议的研究意义重大，因为 它将决定如何在全国范围内大规模使用POC SCD筛查试验。它还将使协调 循证护理和初级和专科提供者之间以及纵向上对患者的护理的连续性 终生--控制这种终生疾病的一个关键方面。SCD SIMC还将促进实时数据 SCD控制研究和政策的管理。这项研究的预期直接结果是SCD SIMCS 这在乌干达的数字和卫生基础设施上发挥了最佳作用，并展示了其对获取 SCD筛查和护理以及SCD儿童的临床转归。预期的长期结果是，SCD 将在乌干达和其他撒哈拉以南非洲国家的卫生系统中采用、整合和扩大SIMC， 特别是那些血型SCTM已经被采纳为SCD筛查的国家标准的国家。如果 有效，SCD SIMC将产生重要的积极影响，因为它将降低SCD筛查的成本，采取 筛查服务和循证护理更靠近撒哈拉以南大多数儿童所在的农村社区 非洲活着，并最终将数百万儿童从可预防和残疾死亡中解救出来。