Development and validation in Ecuador of the EPD Questionnaire, a diabetes‐specific patient‐reported experience and outcome measure: A mixed‐methods study

Abstract

Introduction 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. Methods 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. Results 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. Conclusion 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. 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.

Validation of a scale to assess adherence to oral chemotherapy based on the experiences of patients and healthcare professionals (EXPAD-ANEO)

“…This approach redirects health systems towards person-centered care ( González-Bueno et al, 2018 ). In general, improving the quality and safety of patient care involves evaluating patient-reported experience measures and patient-reported outcomes measures ( Valderas and Alonso, 2008 ), as we have in this study, along with other more objective indicators, with the aim of orienting the system towards increasingly integrated and humanized care, in which patients can take decisions about their own health ( Martin-Delgado et al, 2021 ).…”

Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes

“…A recent review concluded that adoption of PROMs in type 2 diabetes care remains uncommon and non-routine [ 11 ]. Indeed, only a few countries have considered PROMs for routine measurement of diabetes quality care [ 17 – 19 ] and there are no PROMs for diabetes that are widely used. Recently, the International Consortium for Health Outcomes Measurement (ICHOM) recommended a standard set of PROMs for diabetes [ 20 ].…”

What is important for people with type 2 diabetes? A focus group study to identify relevant aspects for Patient-Reported Outcome Measures in diabetes care

“…Also, not all PROMs are informed by perspectives of people with type 2 diabetes with the risk of missing aspects valuable to them. Only a few studies have considered perspectives of people with type 2 diabetes to develop PROMs, some of them have built new tools and others have adapted previously validated tools and added newly developed items [18][19][20][21]. Therefore, there is still a need to identify perspectives of people with type 2 diabetes.…”