ABSTRACT
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.
Resumo Introdução: A doença renal crônica (DRC) é um problema de saúde pública mundial. No Brasil, as taxas de incidência e prevalência da DRC dialítica aumentam progressivamente, mas o processo de transição apresenta-se como desafio para pacientes e cuidadores no enfrentamento da doença. Urgência dialítica, ausência de acesso planejado ou conhecimento prévio do tratamento é uma realidade para a maioria. Diretrizes recomendam que opções de tratamento devam incluir a preferência consciente de um paciente totalmente informado. No entanto, informação educacional pré-diálise é exceção, acarretando grande número de diálises iniciais não planejadas. O estudo original "Empowering Patients on Choices for Renal Replacement Therapy" (EPOCH-RRT) teve por objetivo identificar as prioridades do paciente e as lacunas na tomada de decisões compartilhadas sobre a diálise, utilizando entrevistas estruturadas, com questões sobre dados demográficos, história clínica e percepção dos pacientes sobre sua saúde. O objetivo desta pesquisa foi realizar a tradução, adaptação transcultural e validação dos questionários utilizados no Estudo EPOCH-RRT para o contexto brasileiro. Método: Trata-se de estudo metodológico que consistiu na tradução inicial, síntese das traduções, retro tradução, revisão por um comitê de especialistas, pré-teste e avaliação das propriedades psicométricas do instrumento. Todos os preceitos éticos foram seguidos. Resultados: Os questionários foram traduzidos, adaptados e validados para o contexto brasileiro. Adicionalmente, foi aplicado em 84 pacientes renais crônicos em hemodiálise, diálise peritoneal e ambulatoriais. Discussão: Há carência de enfoque educativo-terapêutico dirigido aos pacientes com DRC, e o questionário EPOCH-RRT pode ser uma ferramenta para serviços de diálise brasileiros mudarem esse paradigma.
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.
