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

中风是世界上第二大死因。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，很少有研究调查塞拉利昂中风的真正负担和影响。在高收入国家，卒中登记是提供数据以了解卒中作为一种疾病、为政策提供信息和指导卒中服务设计的重要工具。卒中登记记录并推动了高收入国家卒中护理质量和卒中后结果的巨大改善。卒中登记是了解和解决中低收入国家卒中高负担的潜在有效工具。然而，需要进一步的研究来了解如何在低资源环境下最好地设计卒中登记，以及它们提供的数据的准确性和代表性。在塞拉利昂，获得医疗保健的机会有限，因此并非所有中风患者都到政府医院就诊。此外，医院数据系统不发达，死亡原因登记有限。这对冲程寄存器的设计提出了挑战。该奖学金将审查在撒哈拉以南非洲使用的中风登记方法。它将评估所使用方法的质量并总结结果数据。该研究金将分析来自塞拉利昂中风登记册的数据，以描述塞拉利昂弗里敦的中风患者。它将探讨哪些类型的中风正在发生，以及主要的危险因素是什么。该研究将评估中风后的结果，了解中风患者在中风后90天和一年内的残疾和健康相关生活质量（HRQL）。中风对个体的影响将通过研究中风后的HRQL来检验。我将用当地语言Krio验证HRQL问卷。患者分别在中风后立即、90天和1年后随访。我将研究中风后的HRQL是否可以通过患者水平信息（如年龄和性别）以及疾病特定信息（如功能能力或中风类型和严重程度）来预测。我将采用“等效”框架来测试和验证HRQL问卷的翻译，它假设不同文化对健康和生活质量的概念不同。它考虑到这些差异，并允许更有当地意义的翻译。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/顺应理论的应用。在资源匮乏的环境中，许多中风患者可能无法获得基于医院的护理。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一般人群的代表性。该项目将评估医院中风登记册是否涵盖了弗里敦发生的所有中风，从而评估登记册的完整性。它将试图了解哪些类型的中风患者没有出现在医院，因此没有被医院的登记册所记录。这项研究将首次提供关于塞拉利昂中风的高质量数据，显示哪些人患有中风，正在发生什么类型的中风以及主要风险因素。随着时间的推移，它将证明中风对患者HRQL的影响。人权调查问卷的验证将支持未来的研究人员在塞拉利昂进行卫生和经济评价。最后，该项目将有助于我们了解医院疾病登记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.