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The Nurse Champion Model for Sickle Cell Disease Early Diagnosis and Care Access

镰状细胞病早期诊断和护理的护士冠军模型

基本信息

批准号：
10218332
负责人：
Cheedy Jaja
金额：
$ 17.61万
依托单位：
UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-04-15 至 2022-01-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10218332
关键词：
Address Adoption Africa South of the Sahara African Birth Blood Vessels Caring Characteristics Child Child Care Child Health Child Mortality Chronic Disease Client Clinical Clinical Pathways Communities Comprehensive Health Care Consolidated Framework for Implementation Research Cost Analysis Counseling Country Development Devices Diagnosis Diagnostic Discipline of Nursing Early Diagnosis Education Educational Status Effectiveness Endemic Diseases Equipment and supply inventories Ethnography Evaluation Evidence based practice Feasibility Studies Focus Groups Foundations Geographic Locations Goals Group Interviews HIV Health Health Personnel Health Services Accessibility Health system Hemoglobin Human Human Resources Infant Intervention Interview Laboratories Lead Life Life Expectancy Methods Modeling Morbidity - disease rate Neonatal Screening Newborn Infant Nurses Nursing Research Organ Outcome Patient Education Performance Phase Pre-Post Tests Prevention Preventive care Preventive measure Primary Health Care Process Provider Public Health Research Resources Rural Sickle Cell Anemia Sierra Leone Site Standardization Survival Rate Time Training Training Programs United States National Institutes of Health base burden of illness care coordination cost design disease diagnosis early screening effectiveness implementation study evidence base field study follow-up formative assessment implementation barriers implementation cost implementation facilitators implementation framework implementation outcomes implementation study improved innovation interest laboratory experience mortality neonate novel peer performance tests point of care testing primary care setting programs research study response screening screening program standard of care support tools

项目摘要

Abstract Sickle cell disease (SCD) is a major contributor to child morbidity and mortality. Life expectancy of babies with SCD varies widely depending on geographic location. In the USA, universal newborn screening (NBS) facilitates early diagnosis and prompt linkage to care with overall survival rate in SCD children greater than 94%. In Sub- Saharan Africa (SSA) approximately 90% of the children born annually with SCD will die before their fifth birthday, often undiagnosed. The absence of early diagnosis through laboratory-based NBS program is a major barrier to implementation of timely preventive measures in SSA. Emergent, novel, inexpensive, point-of-care tests (POCTs), with analytic characteristics and field-tested performance comparable to laboratory methods offer intriguing options for early diagnosis of SCD in primary health centers (PHCs). Our study objective is to use a type-2 hybrid implementation-effectiveness design to assess and pilot a SCD-POCT model in one urban and one rural PHC over 6 months in Sierra Leone where our extant SCD health systems strengthening and human capacity building research program is housed. Our rationale is that early SCD diagnosis in neonates demonstrably decreases morbidity and mortality rates considerably in the first 5 years of life. In this feasibility study, the research aims include developing and assisting PHCs in implementing the model; evaluating processes/determinants of model implementation; and evaluating the model’s effectiveness, acceptability and effects on provider and client outcomes. Using implementation science frameworks, our research team will iteratively engage key stakeholders to inform the development of the PHC-based SCD-POCT model. The evidence-informed nurse champion platform will frame the implementation model and will include pre/post-test counseling, nurse administered POCT and care coordination. Nurses will complete a comprehensive provider training program prior to implementing the model. Three specific aims undergird our study: (1) Assess barriers and facilitators to primary health center provision of SCD-POCT with a nurse champion model; (2) Finalize an implementation plan for the intervention using Implementation Mapping and stakeholder input; and (3) pilot the nurse champion model in two primary health centers and evaluate determinants and implementation costs. The process of developing and implementing the model will be described using implementation science frameworks, ethnographic observations, qualitative interviews and implementation mapping to identify barriers/enablers. Nurse and client outcomes will be assessed by focus groups and in-depth interviews. Model implementation will be assessed qualitatively and quantitatively. Acceptability, barriers, and enablers will be examined qualitatively based on focus group and interview responses. A preliminary costing assessment will consider the nurses and research study financial outlays. We expect our study to establish the feasibility and scalability of SCD-POCT intervention within extant and sustainable clinical pathways in PHCs in the sub-Saharan African settings.

摘要镰状细胞病（SCD）是儿童发病率和死亡率的主要原因。婴儿的预期寿命 SCD因地理位置而异。在美国，新生儿普遍筛查（NBS）早期诊断和及时联系护理，SCD儿童的总生存率大于94%。在子- 撒哈拉非洲（SSA）每年出生的SCD儿童中约有90%将在五岁生日前死亡，经常无法确诊。缺乏通过基于实验室的NBS项目进行早期诊断是一个主要障碍，及时采取预防措施。紧急、新颖、廉价的床旁检测（POCT），具有与实验室方法相当的分析特性和现场测试性能，在初级卫生中心（PHCs）早期诊断SCD的有趣的选择。我们的研究目标是使用第2类混合实施效果设计，以评估和试点一个城市的SCD-POCT模型，在塞拉利昂的一个农村初级保健中心，我们现有的SCD卫生系统得到加强，能力建设研究计划是住房。我们的基本原理是新生儿SCD的早期诊断明显降低生命前5年的发病率和死亡率。在这种可行性中，研究的目的包括发展和协助初级保健中心实施该模式;评估模型实施的过程/决定因素;以及评估模型的有效性、可接受性和对供应商和客户结果的影响。使用实施科学框架，我们的研究团队将迭代地让关键利益相关者参与，为基于PHC的SCD-POCT模型的开发提供信息。的循证护士冠军平台将制定实施模式，并将包括前/后测试咨询、护士管理POCT和护理协调。护士将完成一个全面的提供者在实施该模式之前，我们的研究有三个具体目标：（1）评估障碍和促进者，以初级卫生中心提供SCD-POCT与护士冠军模式;（2）最终确定利用实施规划和利益相关者的投入制定干预措施的实施计划;以及（3）对护士冠军模式在两个初级卫生中心，并评估决定因素和实施成本。的将使用实施科学框架描述开发和实施模型的过程，民族志观察、定性访谈和执行情况摸底，以确定障碍/促进因素。护士和客户的结果将通过焦点小组和深入访谈进行评估。模型实施将进行定性和定量评估。可接受性、障碍和促进因素将得到定性审查基于焦点小组和访谈的回答。初步成本评估将考虑护士和研究经费。我们希望我们的研究能够建立SCD-POCT的可行性和可扩展性在撒哈拉以南非洲地区的初级保健中，在现有和可持续的临床路径中进行干预。