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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