Translation, cross-cultural adaptation and validation of the EPOCH-RRT questionnaire “Empowering Patients On Choices For Renal Replacement Therapy” for the Brazilian context

Abstract Introduction: Chronic kidney disease (CKD) is a global public health problem. In Brazil, the incidence and prevalence rates of dialysis CKD progressively increase, but the transition process is a challenge for patients and caregivers in coping with the disease. Dialysis urgency, lack of planned access or prior knowledge of treatment is a reality for most. Guidelines recommend that treatment options should include the conscious preference of a fully informed patient. However, pre-dialysis educational information is an exception, leading to a large number of unplanned initial dialysis. The original study “Empowering Patients on Choices for Renal Replacement Therapy” (EPOCH-RRT) aimed to identify patient priorities and gaps in shared decision-making about dialysis, using structured interviews with questions about demographics, clinical history and patients' perception of their health. The goal of this study was to carry out the translation, cross-cultural adaptation and validation of the questionnaires used in the EPOCH-RRT Study for the Brazilian context. Method: This is a methodological study that consisted of the initial translation, synthesis of the translations, back translation, review by a committee of experts, pre-test and evaluation of the psychometric properties of the instrument. All ethical precepts were followed. Results: The questionnaires were translated, adapted and validated for the Brazilian context. Additionally, it was applied to 84 chronic renal patients on hemodialysis, peritoneal dialysis and outpatients. Discussion: There is a lack of an educational-therapeutic approach aimed at patients with CKD, and the EPOCH-RRT questionnaire can be a tool for Brazilian dialysis services to change this paradigm.

摘要：慢性肾脏病（CKD）是全球性的公共卫生问题。在巴西，透析CKD的发病率及患病率呈渐进式上升，但疾病过渡过程对患者及护理人员而言构成了挑战。透析急迫性、缺乏计划性通路或对治疗的无先期了解，对大多数患者而言已成为现实。指南建议，治疗方案应包括充分知情患者的主动选择。然而，透析前教育信息却是一个例外，导致大量非计划性初始透析的发生。原研究《赋权患者于肾脏替代疗法选择》（EPOCH-RRT）旨在通过结构化访谈，探讨患者对透析的优先事项及共同决策中的差距，访谈问题涉及人口统计学、临床病史以及患者对其健康状况的认知。本研究的目的是对EPOCH-RRT研究中使用的问卷进行翻译、跨文化适应和验证，以适应巴西的语境。方法：本研究为方法论研究，包括初始翻译、翻译综合、回译、专家委员会审查、预测试及评估工具的心理测量学特性。所有伦理规范均得到遵守。结果：问卷已针对巴西语境进行翻译、适应和验证。此外，该问卷已应用于84名接受血液透析、腹膜透析及门诊治疗的慢性肾病患者。讨论：目前缺乏针对CKD患者的教育-治疗途径，而EPOCH-RRT问卷可以成为巴西透析服务改变这一格局的工具。