Dataset Information

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.

SUBMITTER: Rodrigues LAS

PROVIDER: S-EPMC10139720 | biostudies-literature | 2023 Jan-Mar

REPOSITORIES: biostudies-literature

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Publications

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

Rodrigues Luciana Adorno Sattin LAS Almeida Fernando Antonio de FA Rodrigues Cibele Isaac Saad CIS

Jornal brasileiro de nefrologia 20230101 1

<h4>Introduction</h4>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 ...[more]

PMID: 35789243

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Project description:Abstract Background Peyronie’s disease has an impact on men’s mental and physical health. Aim We sought to translate the Peyronie’s Disease Questionnaire into Danish, adapt it to the Danish cultural setting, and test it in a Danish population. Methods Translation of the Peyronie’s Disease Questionnaire was performed according to the guidelines for adapting health status measures for use in languages other than the source language by Beaton et al. The validated American Peyronie’s Disease Questionnaire was developed to monitor patient symptoms after an intervention and to inspire a subsequent dialogue about physical and psychological symptoms with a healthcare provider, thereby allowing the patient and the healthcare professional to choose the best treatment. The expert committee agreed on a Danish version after cross-cultural adaptation. The Danish Peyronie’s Disease Questionnaire was sent by electronic mail to a preselected group of 41 men with Peyronie’s disease. Outcomes After completing the questionnaire, 32 men participated in a video interview regarding the questionnaire and were asked to identify any problematic fields or areas open to misunderstanding. Results The Peyronie’s Disease Questionnaire underwent major modifications in light of the comments of the first 10 respondents. Thereafter, only minor changes were made until data saturation was reached after 27 of the 32 respondents had been interviewed. In 87% of respondents Peyronie’s disease bothered from the last time they had intercourse, and 93% of the men experienced being bothered by having intercourse less often. Peyronie’s disease made 73% of respondents feel bodily discomfort, and 88% had intercourse less often than they used to have due to Peyronie’s disease. Clinical Implications The Peyronie’s Disease Questionnaire is a valuable tool in the crucial task of addressing Peyronie’s disease, providing insight into the mental and sexual health problems as well as physical challenges faced by patients. Strengths and Limitations The interviewer’s modest experience in conducting interviews is believed to have been duly compensated for by continuous and accumulating learning-while-doing process because the same interviewer conducted all of the interviews and did so consecutively. Conclusions Danish men expressed satisfaction with the questionnaire and found it valuable as a tool when visiting the doctor for the first time.

Project description:BackgroundConsideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care. Until recently, there have been no suitable instruments to assess health-related quality of life (HRQoL,) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The "Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire" (CPCHILD) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD Questionnaire into Brazilian Portuguese, thus permitting researchers in Brazil to access this important tool for measuring HRQoL in this population, as well as the possibility of making comparisons with other studies that use the same questionnaire in other languages.MethodThe cross-cultural adaptation included two forward translations by independent translators, their synthesis, two back-translations by independent translators, an assessment of the versions by an expert committee and the development of a pre-final version, which was tested on 30 caregivers of children (5 -18) with severe cerebral palsy (GMFCS IV & V).ResultsDespite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications were required to account for the socioeconomic and cultural levels of the target population.ConclusionThe translation and cross-cultural adaptation of the CPCHILD questionnaire provides a Brazilian Portuguese equivalent to measure the HRQoL of children with severe developmental disabilities, with the potential to measure the benefits of various procedures that are indicated for these patients. This adaptation exhibited a satisfactory level of semantic equivalence between the Portuguese target and the original English source versions. The validity of the Brazilian version of the instrument must be established in the future by assessing its psychometric properties on Brazilian epidemiological samples.

Dataset Information

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

Introduction

Method

Results

Discussion

Publications

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

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