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Protocol for the Cultural Translation and Adaptation of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project Endometriosis Participant Questionnaire (EPHect)

ABSTRACT: Endometriosis affects 10% of women worldwide and is one of the most common causes of chronic pelvic pain and infertility. However, causal mechanisms of this disease remain unknown due to its heterogeneous presentation. In order to successfully study its phenotypic variation, large sample sizes are needed. Pooling of data across sites is not always feasible given the large variation in the complexity and quality of the data collected. The World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonization Project (EPHect) have developed an endometriosis participant questionnaire (EPQ) to harmonize non-surgical clinical participant characteristic data relevant to endometriosis research, allowing for large-scale collaborations in English-speaking populations. Although the WERF EPHect EPQs have been translated into different languages, no study has examined the cross-cultural translation and adaptation for content and face validity. In order to investigate this, we followed the standard guidelines for cross-cultural adaptation and translation of the minimum version of the EPQ (EPQ-M) using 40 patients who underwent laparoscopic surgery in Turkey and 40 women in Northern Cyprus, aged between 18 and 55. We assessed the consistency by using cognitive testing and found the EPHect EPQ-M to be comprehensive, informative, and feasible in these two Turkish-speaking populations. The translated and adapted questionnaire was found to be epidemiologically robust, taking around 30–60 min to complete; furthermore, participants reported a similar understanding of the questions, showing that common perspectives were explored. Results from the cognitive testing process led to minor additions to some items such as further descriptive and/or visuals in order to clarify medical terminology. This paper illustrates the first successful cross-cultural translation and adaptation of the EPHect EPQ-M and should act as a tool to allow for further studies that wish to use this questionnaire in different languages. Standardized tools like this should be adopted by researchers worldwide to facilitate collaboration and aid in the design and conduction of global studies to ultimately help those affected by endometriosis and its associated symptoms.

SUBMITTER: Mis C

PROVIDER: S-EPMC8593963 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectiveTo harmonize standard operating procedures (SOPs) and standardize the recording of associated data for collection, processing, and storage of fluid biospecimens relevant to endometriosis.DesignAn international collaboration involving 34 clinical/academic centers and 3 industry collaborators from 16 countries on 5 continents.SettingIn 2013, 2 workshops were conducted, followed by global consultation, bringing together 54 leaders in endometriosis research and sample processing worldwide.Patient(s)None.Intervention(s)Consensus SOPs were based on: [1] systematic comparison of SOPs from 18 global centers collecting fluid samples from women with and without endometriosis on a medium/large scale (publication on >100 cases), [2] literature evidence where available, or consultation with laboratory experts otherwise, and [3] several global consultation rounds.Main outcome measure(s)Standard recommended and minimum required SOPs for biofluid collection, processing, and storage in endometriosis research.Result(s)We developed recommended standard and minimum required SOPs for the collection, processing, and storage of plasma, serum, saliva, urine, endometrial/peritoneal fluid, and menstrual effluent, and a biospecimen data-collection form necessary for interpretation of sample-derived results.Conclusion(s)The Endometriosis Phenome and Biobanking Harmonisation Project SOPs allow endometriosis research centers to decrease variability in biofluid sample results, facilitating between-center comparisons and collaborations. The procedures are also relevant to research into other female conditions involving biofluid samples subject to cyclic reproductive influences. The consensus SOPs are based on the best available evidence; areas with limited evidence are identified as requiring further pilot studies. The SOPs will be reviewed based on investigator feedback, and through systematic tri-annual follow-up. Updated versions will be made available at: endometriosisfoundation.org/ephect.

Project description:BackgroundPeyronie's disease has an impact on men's mental and physical health.AimWe sought to translate the Peyronie's Disease Questionnaire into Danish, adapt it to the Danish cultural setting, and test it in a Danish population.MethodsTranslation 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.OutcomesAfter 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.ResultsThe 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 implicationsThe 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 limitationsThe 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.ConclusionsDanish men expressed satisfaction with the questionnaire and found it valuable as a tool when visiting the doctor for the first time.

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Protocol for the Cultural Translation and Adaptation of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project Endometriosis Participant Questionnaire (EPHect)

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