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

摘要 镰状细胞病(SCD)是儿童发病率和死亡率的主要因素。婴儿的预期寿命 根据地理位置的不同，SCD差异很大。在美国，全民新生儿筛查(NBS)有助于 早期诊断和及时的护理与SCD儿童的总体存活率大于94%。在子- 撒哈拉非洲(SSA)每年出生的SCD儿童中，约90%将在5岁之前死亡， 通常是未确诊的。缺乏通过以实验室为基础的国家统计局项目进行早期诊断是 在SSA中实施及时的预防措施。紧急、新颖、廉价的护理点检测 (POCT)，具有与实验室方法相媲美的分析特征和现场测试性能 初级卫生中心(PHCS)早期诊断SCD的耐人寻味的选择。我们的研究目标是使用一种 在一个城市和地区评估和试点SCD-POCT模式的第二类混合实施-有效性设计 在塞拉利昂6个月的时间里，一个农村初级保健中心，在那里，我们现有的SCD卫生系统得到加强，人类 建立了能力建设研究计划。我们的理论基础是新生儿SCD的早期诊断 明显降低了出生后头5年的发病率和死亡率。在这方面的可行性 研究，研究目标包括开发和协助PHCS实施模型；评估 模型实施的过程/决定因素；以及评价模型的有效性、可接受性和 对提供者和客户结果的影响。使用实施科学框架，我们的研究团队将 反复接触关键利益相关者，为基于PHC的SCD-POCT模型的开发提供信息。这个 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、护士实施POCT和护理协调。护士将完成一项全面的提供者 在实施该模型之前的培训计划。我们的研究有三个具体目标：(1)评估障碍 和初级卫生中心的促进者提供具有护士冠军模式的SCD-POCT；(2)敲定 使用实施图和利益攸关方输入的干预实施计划；以及(3)试行 在两个初级卫生中心建立护士冠军模式，并评估决定因素和实施成本。这个 将使用实施科学框架来描述开发和实施该模型的过程， 人种学观察、定性访谈和执行情况图，以确定障碍/推动因素。 护士和病人的结果将通过焦点小组和深入访谈进行评估。模型实施将 被定性和定量地评估。将对可接受性、障碍和推动因素进行定性检查 基于焦点小组和面试回应。初步成本评估将考虑护士和 研究学习财务支出。我们期望我们的研究能够确立SCD-POCT的可行性和可扩展性 撒哈拉以南非洲地区初级保健服务现有和可持续临床路径的干预。

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.