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：
10383727
负责人：
Cheedy Jaja
金额：
$ 17.66万
依托单位：
UNIVERSITY OF SOUTH FLORIDA
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 2024-01-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10383727
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.

抽象的镰状细胞疾病（SCD）是儿童发病率和死亡率的主要因素。婴儿的预期寿命 SCD取决于地理位置的不同。在美国，通用新生儿筛选（NBS）的收藏夹早期诊断和迅速联系，以与SCD儿童的总生存率相比，大于94％。在子中撒哈拉非洲（SSA）每年与SCD出生的孩子中约有90％将在他们五岁生日之前死亡，通常没有诊断。通过基于实验室的NBS计划缺乏早期诊断，是在SSA中实施及时的预防措施。新兴，新颖，廉价的护理测试（POCT），具有与实验室方法相当的分析特征和现场测试的性能提供初级卫生中心（PHC）早期诊断的有趣选择。我们的研究目标是使用 2型混合实施效应设计，以评估和驾驶一个城市中的SCD-POCT模型塞拉利昂（Sierra Leone）有一个艰难的phc在6个月内，我们的扩展SCD卫生系统加强和人类能力建设研究计划已容纳。我们的理由是，新生儿的早期SCD诊断在生命的头5年中，删除发病率和死亡率降低。在这种可行性中研究的目的包括开发和协助PHC实施该模型。评估模型实施的过程/决定因素；并评估模型的有效性，可接受性和对提供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为基于PHC的SCD-POCT模型的开发提供信息。这循证信息的护士冠军平台将构建实施模型，并将包括预测试前/后测试咨询，护士管理POCT和护理协调。护士将完成全面的提供商在实施模型之前进行培训计划。三个特定目标是我们的研究：（1）评估障碍并通过护士冠军模型为SCD-POCT提供SCD-POCT的主持人；（2）最终确定使用实施映射和利益相关者投入的实施计划；（3）飞行员护士冠军模型在两个主要卫生中心中，并评估确定性和实施成本。开发和实施模型的过程将使用实施科学框架进行描述，民族志观察，定性访谈和实施映射，以识别障碍/推动者。护士和客户结果将由焦点小组和深入的访谈评估。模型实施将进行定性和定量评估。可接受性，障碍和推动者将进行定性检查基于焦点小组和面试回答。初步成本评估将考虑护士和研究研究金融支出。我们希望我们的研究能够确定SCD-POCT的可行性和可伸缩性在撒哈拉以南非洲地区的PHC中，在扩展和可持续的临床途径中进行干预。