ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Development and validation in Ecuador of the EPD Questionnaire, a diabetes-specific patient-reported experience and outcome measure: A mixed-methods study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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9 citing papers in PubMed.
- Validation of a Patient-Created, Patient-Reported Experience Measure for Inflammatory Bowel Disease in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Development and Validation of a Culturally Adapted Patient-Reported Experience Measure for Diabetes Care in Thailand: Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Instruments for assessing patient-reported experience measures among patients with diabetes mellitus: a scoping review.Journal of patient-reported outcomes · 2025Article
- Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes.Israel journal of health policy research · 2024Article
- Evaluating Staff Attitudes, Intentions, and Behaviors Related to Cyber Security in Large Australian Health Care Environments: Mixed Methods Study.JMIR human factors · 2023Article
- Validation of a scale to assess adherence to oral chemotherapy based on the experiences of patients and healthcare professionals (EXPAD-ANEO).Frontiers in pharmacology · 2023Article
- Development and validation in Ecuador of the EPD Questionnaire, a diabetes-specific patient-reported experience and outcome measure: A mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Disrupting patterns of exclusion in participatory spaces: Involving people from vulnerable populations.Health expectations : an international journal of public participation in health care and health policy · 2022Article
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Abstract
introductionThe 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.
methodsThe 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.
resultsForty-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.
conclusionThe 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. PATIENT OR PUBLIC CONTRIBUTION: 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.
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