Atenea Research Group, Foundation for the Promotion of Health and Biomedical Research, Alicante, Spain.
Health Services and Policy Research Group, University of Exeter, Exeter, UK.
Health Expect. 2022 Oct;25(5):2134-2146. doi: 10.1111/hex.13366. Epub 2021 Sep 28.
The global prevalence of diabetes in 2019 in adults was estimated to be 9.3%. This study developed in Ecuador, for the first time, instruments to assess patient-reported outcomes and experiences.
The Experiences of the Person with Diabetes (EPD) Questionnaire is a diabetes-specific instrument. A mixed-methods study was conducted. First, a qualitative item development phase that included four focus groups and six semi-structured interviews with patients was conducted in different rural and urban areas of Ecuador to obtain information on culture, beliefs, demographics, diet and social perspectives. A second quantitative phase for psychometric validation was carried out in primary care settings of rural and urban areas of Ecuador.
Forty-two and four hundred and eighty-nine participants were included in each phase, respectively. The item development phase resulted in a questionnaire of 44 items (23 for perceived outcomes and 21 for experiences). In the validation study, most participants were women (58%) and from urban areas (57%). Exploratory factor analysis revealed three dimensions for each instrument. Outcomes instrument dimensions were symptoms and burnout, worries and fears and social limitations. Experiences instrument dimensions were information, patient-centred care and care delivery. Cronbach's α values of the total score and dimensions were high, ranging between .81 and .93 in both instruments. Confirmatory factor analysis showed an acceptable fit of the data.
The EPD Questionnaire is probably the first instrument developed to assess patient-reported experiences and perceived outcomes in a middle-income country that included patients to capture all dimensions relevant for the intended population. Its psychometric properties are robust and could provide valuable information for clinicians and policymakers in the region.
The development of these instruments has taken into consideration patients and the public since their conception. A qualitative approach gathered relevant information related to the cultural, social and economic burden of different populations in Ecuador. Before validation, a pilot test was carried out with users of the National Health Services to obtain their perspectives and insights of the developed instrument. Finally, during the data analysis, we have given special consideration to social variables such as rural and urban populations.
2019 年，全球成年人糖尿病患病率估计为 9.3%。本研究在厄瓜多尔首次开发了评估患者报告结局和体验的工具。
体验糖尿病患者问卷（EPD）是一种专门针对糖尿病的工具。本研究采用混合方法进行。首先，在厄瓜多尔不同的农村和城市地区进行了为期四个焦点小组和六次半结构化访谈的定性项目开发阶段，以获取有关文化、信仰、人口统计学、饮食和社会观点的信息。其次，在厄瓜多尔农村和城市地区的初级保健环境中进行了心理测量验证的第二阶段。
每个阶段分别纳入了 42 名和 489 名参与者。在项目开发阶段，产生了一个包含 44 个项目的问卷（23 个用于感知结果，21 个用于体验）。在验证研究中，大多数参与者为女性（58%）和来自城市地区（57%）。探索性因子分析显示，每个工具都有三个维度。结局工具维度为症状和倦怠、担忧和恐惧以及社会限制。体验工具维度为信息、以患者为中心的护理和护理提供。两个工具的总分和维度的克朗巴赫 α 值均较高，均在 0.81 到 0.93 之间。验证性因子分析显示数据拟合良好。
EPD 问卷可能是第一个在中低收入国家开发的评估患者报告体验和感知结局的工具，该工具纳入了患者，以捕捉目标人群中所有相关维度。其心理测量学特性稳健，可为该地区的临床医生和政策制定者提供有价值的信息。
这些工具的开发从概念上就考虑到了患者和公众的需求。采用定性方法收集了厄瓜多尔不同人群的文化、社会和经济负担的相关信息。在验证之前，对国家卫生服务的使用者进行了试点测试，以获得他们对开发工具的看法和见解。最后，在数据分析过程中，我们特别考虑了农村和城市人口等社会变量。
