Measuring the impact of stroke in Sierra Leone through stroke register methodology

中风是世界上第二大死亡原因。目前，大多数中风死亡发生在低收入和中等收入国家。这项研究旨在了解塞拉利昂的中风情况。据估计，塞拉利昂的中风负担在世界上排名第八。然而，在塞拉利昂，很少有研究调查中风的真正负担和影响。在高收入国家，中风登记一直是提供数据的重要工具，以了解中风是一种疾病，为政策提供信息，并指导中风服务的设计。在高收入国家，卒中登记簿记录并推动了卒中护理质量和卒中后结局的极大改善。卒中记录是了解和处理LMICs中估计的高卒中负担的一个潜在的有力工具。然而，还需要进一步的研究来了解如何在低资源设置下最好地设计笔划寄存器，以及它们提供的数据有多准确和有代表性。在塞拉利昂，获得医疗保健的机会有限，因此并不是每个中风患者都去政府医院就诊。此外，医院数据系统不发达，死因登记有限。这对行程寄存器的设计提出了挑战。该奖学金将回顾撒哈拉以南非洲地区使用的中风登记方法。它将评估所用方法的质量，并总结结果数据。该奖学金将分析塞拉利昂中风登记的数据，以描述塞拉利昂弗里敦中风患者的情况。它将探索中风的类型以及主要的风险因素是什么。这项研究将评估卒中后的预后，了解卒中患者在卒中后90天和一年的残疾和健康相关生活质量(HRQL)，并通过研究卒中后的HRQL来检验卒中对个体的影响。我将用当地语言Krio验证一份HRQL问卷。患者在卒中后立即、卒中后90天和卒中后一年进行随访。我将研究中风后的HRQL是否可以通过患者级别的信息(如年龄和性别)以及特定疾病的信息(如功能能力或中风类型和严重程度)进行预测。我将采用“等值”框架来测试和验证HRQL问卷的翻译，该问卷假设健康和生活质量的概念在不同的文化中是不同的。它考虑到了这些差异，并允许进行更有本地意义的翻译。我将探索将对等框架应用于HRQL问卷翻译的新方法，并进一步发展这一翻译/适应理论的应用。在资源匮乏的情况下，许多中风患者可能无法获得以医院为基础的护理。这项研究的最后一个组成部分将试图了解以医院为基础的疾病登记对普通人群来说是如何具有代表性的。该项目将评估医院中风登记簿是否记录了弗里敦发生的所有中风，因此登记簿有多完整。它将试图了解哪些中风类型的人没有出现在医院，因此没有被基于医院的登记所捕获。这项研究将首次提供塞拉利昂中风的高质量数据，展示谁患有中风，发生什么类型的中风，以及主要的风险因素。随着时间的推移，它将展示中风对患者HRQL的影响。HRQL问卷的验证将支持未来的研究人员在塞拉利昂进行健康和经济评估。最后，该项目将有助于我们理解来自以医院为基础的疾病登记的数据的完整性和解释。

Stroke is the second leading cause of death in the world. Presently, the majority of stroke deaths occur in low and middle income countries (LMICs). This research aims to understand stroke in Sierra Leone. Estimates suggest that Sierra Leone has the eighth highest burden of stroke in the world. However, there has been very little research to investigate the real burden and impact of stroke in Sierra Leone.In high income countries, stroke registers have been important tools to provide the data to understand stroke as a disease, inform policy and guide the design of stroke services. Stroke registers have documented and driven great improvements in the quality of stroke care and the outcomes after stroke in high income countries. Stroke registers are a potentially potent tool to understand and tackle the estimated high burden of stroke in LMICs. However, further research is needed to understand how best to design stroke registers in low resource settings and how accurate and representative the data they provide is. In Sierra Leone access to health care is limited and therefore not everyone with stroke presents to a government hospital. Additionally, hospital data systems are under developed and cause of death registration is limited. This poses challenges to the design of stroke registers. This fellowship will review stroke register methods used in Sub Saharan Africa. It will assess the quality of methods used and summarise the resulting data. This fellowship will analyse data from a stroke register in Sierra Leone to describe who is suffering from stroke in Freetown, Sierra Leone. It will explore what types of strokes are occurring and what the major risk factors are. The research will assess outcomes after stroke, to understand disability and health related quality of life (HRQL) of stroke patients at 90 days and one year post stroke.The impact of stroke on individuals will be examined by researching HRQL after stroke. I will validate a HRQL questionnaire in the local language Krio. Patients are followed up immediately after stroke, 90 days post stroke and one year post stroke. I will examine whether HRQL after stroke can be predicted by patient level information such as age and gender, as well as disease specific information such as functional ability or stroke type and severity. I will employ an 'equivalence' framework to test and validate the translation of the HRQL questionnaire, which assumes that concepts of health and quality of life differ across cultures. It takes into account these differences and allows for more locally meaningful translation. I will explore new methods of applying the equivalence framework to HRQL questionnaire translation and further develop application of this translation/adaptation theory.In low resource settings, many people with stroke may not be able to access hospital based care. The final component of the research will try to understand how representative hospital based disease registers are for the general population. The project will assess whether the hospital stroke register captures all the strokes occurring in Freetown and therefore how complete the register is. It will attempt to understand which people with which types of stroke do not present to hospital and therefore are not captured by a hospital based register. The research will provide high quality data for the first time on stroke in Sierra Leone, demonstrating who is having stroke, what type of strokes are occurring and the major risk factors. It will demonstrate the impact of stroke on HRQL for patients over time. The validation of the HRQL questionnaire will support future researchers to undertake health and economic evaluations in Sierra Leone. Finally, the project will contribute to our understanding of the completeness and the interpretation of data from hospital-based disease registries.