The quality of life in epidermolysis bullosa (EB-QoL) questionnaire: Translation, cultural adaptation, and validation into the Farsi language
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SUBMITTER: Yazdanshenas A
PROVIDER: S-EPMC7522813 | biostudies-literature | 2020 Jun
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe purpose of this study was the translation and cultural adaptation of the CLEFT-Q to Farsi and evaluating the reliability of it.MethodsThe English version of the CLEFT-Q was translated to Farsi following the guidelines set forth by the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). To calculate the reliability, 50 participants filled out the Farsi version of the questionnaire twice at 2-week intervals.ResultsThe difficulties during the translation and cultural adaptation process were as follows: 7.56% of items from the independent forward translations, 62.18% of items from the comparison between two forward translations, and 21% of items from the comparison between post-back translation and the original version. The internal consistency and stability of the Farsi version of the CLEFT-Q were 0.979 and 0.997, which both were categorized as excellent.ConclusionThe Farsi version of the CLEFT-Q is a valid and reliable tool currently available for Farsi-speaking families around the world.
| S-EPMC8603523 | biostudies-literature
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.
| S-EPMC10034581 | biostudies-literature
Project description:IntroductionThe effective treatment of anal fistulas almost always requires surgical intervention, which could be accompanied by post-operative complications, and affect the quality of life of patients. This study aimed to cross-culturally adapt the Persian version of the Quality of Life in patients with Anal Fistula questionnaire and evaluate its validity and reliability.Materials and methodsSixty patients with a mean age of 44 years ranging from 21 to 72 years entered the study. Forty-seven participants were men, and thirteen were women. After performing a scientific translation of the questionnaire based on Beaton's guidelines for cross-cultural adaptation and after extensive reviews by experts and specialists, the final version of the questionnaire was obtained. Then, 60 questionnaires (100%) were filled out by the participants (n = 60) and retrieved during a 7 to 21-day period. Data were collected and analyzed. Finally, according to the obtained data, the validity and reliability of the questionnaire were calculated.ResultsCross-cultural adaptation of the translated questionnaire was verified by the expert committee. The results showed perfect internal consistency (Cronbach alpha = 0.842), and external consistency (intraclass correlation coefficient = 0.800; P<0.001). Spearman correlation coefficient between test and retest was reported to be 0.980 (P-value <0.01), confirming the temporal stability of the translated questionnaire. The interrater reliability based on Cohen's kappa coefficient also demonstrated a perfect degree of agreement between two peer variables (Kappa = 0.889; P<0.001).ConclusionThe Persian translation of the Quality of Life in patients with the Anal Fistula questionnaire was proven to be valid and reliable for the evaluation of the QoL of patients with anal fistula.
| S-EPMC10081801 | biostudies-literature
Project description:OBJECTIVE:To adapt the CEQ into Sri Lankan Sinhala cultural context and to determine the psychometric properties of CEQ. This would yield an opportunity to evaluate childbirth experience among Lankan population. RESULTS:Out of 390, 226 (57.9%) postnatal mothers completed the CEQ after 1 month postpartum. Face validity and content validity were demonstrated with all participants stating that CEQ was easy to understand and complete. For reliability, internal consistency was acceptable for the overall score (0.85) and for all four domains in CEQ (0.65, 0.80, 0.70, 0.83 for "own capacity", "professional support", "perceived safety" and "participation", respectively). A weighted kappa of 0.61-0.80 for all 22 items in CEQ demonstrated a good test-retest reliability. This Sri Lankan version showed fit statistics in line with standard recommendations in exploratory factor analysis. Women with spontaneous onset of labour (except for "professional support" in women with spontaneous onset of labour) and women with a normal birth showed significantly higher CEQ scores. However, oxytocin augmentation could not yield a difference in CEQ scores.
| S-EPMC7666445 | biostudies-literature
Project description:IntroductionFibromyalgia (FM) translates into a reduction in the quality of life of people who suffer from it, being a chronic disease of unknown etiology. One of the most widespread treatments includes the combination of patient education, along with other components. At the educational level, the Fibromyalgia Knowledge Questionnaire (FKQ) is a tool that assesses knowledge of fibromyalgia.ObjectiveTo obtain the translation and cultural adaptation of the FKQ questionnaire into Spanish, as well as its readability, in addition to knowing the relationship between knowledge of the disease and the level of disability.MethodIn phase one, a translation-back translation and an evaluation of the readability of the questionnaire was carried out from INFLESZ, while in phase two, the questionnaire was passed to women with FM to detect their knowledge of the disease. A total of 49 women participated, with a mean age of 54.48 years.ResultsThe Spanish version of the FKQ questionnaire was rated by the participants in all its items as "clear and understandable". The readability obtained by the questionnaire was similar to its original version, with both totals being in the "normal" range, following the INFLESZ ranges. Regarding the patients' knowledge about FM, the component in which the highest score was obtained was physical activity (80% correct), while the one that obtained the worst score was knowledge about medication (50% correct). In addition, an inverse correlation was obtained between the FKQ and the FIQ (Fibromyalgia Impact Questionnaire) (r = -0.438; p < 0.01).ConclusionsThe FKQ has been translated and culturally adapted, obtaining a correct understanding by the participants, as well as a degree of readability similar to the original questionnaire. Furthermore, it was obtained that, the lower the level of knowledge of the sick person, the greater the disability.
| S-EPMC8305758 | biostudies-literature
Project description:INTRODUCTION:Oropharyngeal dysphagia (OD) is a disorder that can have devastating and long lasting effects on a person's medical, mental and psychosocial well-being, thus negatively impacting quality of life. There is currently no validated dysphagia-specific quality of life instrument in Norway. This project aims to evaluate the psychometric properties of the culturally adapted Norwegian version of SWAL-QOL (Nor-SWAL-QOL). METHODS:The original SWAL-QOL was translated into Norwegian according the international translation guidelines. A group of 102 persons with OD and a group of 123 healthy controls were recruited to assess the validity and reliability of the Nor-SWAL-QOL. Correlation analysis of the Nor-SWAL-QOL and the Short Form 36 (SF-36) and correlation analysis of OD group and control group Nor-SWAL-QOL subscale scores were computed to determine convergent, discriminant, and known-groups validity which help comprise construct validity. Internal consistency, test-retest reliability and intraclass correlation coefficient (ICC) were computed for reliability. RESULTS:Convergent and discriminant validity was demonstrated between Nor-SWAL-QOL subscales and SF-36 domains, and distinguished between persons with and those without oropharyngeal dysphagia on all subscales and on the symptom frequency battery (p < 0.001). Additionally, the Nor-SWAL-QOL differentiated between symptom severity levels within the OD group; those requiring food and liquid modifications and those who are tube fed and not tube fed. Nor-SWAL-QOL showed good reliability with adequate internal consistency (Cronbach's α ≥0.70), test-retest reliability (Spearman's rho values 0.68-0.90) and ICC values (0.67-0.89) for all subscales and for the symptom frequency battery. CONCLUSION:Access to valid and reliable dysphagia-specific QoL outcome measures for health care practitioners, dysphagia clinicians and researchers is necessary for comprehensive assessment and treatment outcome measures. The Nor-SWAL-QOL exhibits sufficient psychometric properties for implementation in the Norwegian population.
| S-EPMC6896756 | biostudies-literature
Project description:The Health Literacy Questionnaire (HLQ), developed in Australia in 2012 using a 'validity-driven' approach, has been rapidly adopted and is being applied in many countries and languages. It is a multidimensional measure comprising nine distinct domains that may be used for surveys, needs assessment, evaluation and outcomes assessment as well as for informing service improvement and the development of interventions. The aim of this paper is to describe the German translation of the HLQ and to present the results of the validation of the culturally adapted version. The HLQ comprises 44 items, which were translated and culturally adapted to the German context. This study uses data collected from a sample of 1,058 persons with chronic conditions. Statistical analyses include descriptive and confirmatory factor analyses. In one-factor congeneric models, all scales demonstrated good fit after few model adjustments. In a single, highly restrictive nine-factor model (no cross-loadings, no correlated errors) replication of the original English-language version was achieved with fit indices and psychometric properties similar to the original HLQ. Reliability for all scales was excellent, with a Cronbach's Alpha of at least 0.77. High to very high correlations between some HLQ factors were observed, suggesting that higher order factors may be present. Our rigorous development and validation protocol, as well as strict adaptation processes, have generated a remarkable reproduction of the HLQ in German. The results of this validation provide evidence that the HLQ is robust and can be recommended for use in German-speaking populations.Trial registrationGerman Clinical Trial Registration (DRKS): DRKS00000584. Registered 23 March 2011.
| S-EPMC5325258 | biostudies-literature
Project description:ObjectiveTo translate and cross-culturally adapt into Italian the YQOL-DHH (Youth Quality of Life Instrument-Deaf and Hard of Hearing Module), an instrument to evaluate the health-related quality of life in young deaf people. It could be useful for professionals, teachers, and parents to take care of deaf adolescents' needs.Study designForward-backward translation, cross-cultural adaptation, and cognitive debriefing.SettingThe cognitive debriefing was performed online with professionals and during clinical practice with deaf adolescents.MethodsA methodological study was conducted according to the guidelines provided by the development team. The study consisted of a forward-backward translation and a cross-cultural adaptation. After the original authors' confirmation, a cognitive debriefing was conducted with 30 professionals who work with deaf young people and with 10 deaf adolescents aged 11 to 18 years.ResultsFor the linguistic translation and cross-cultural adaptation, some variations to the original instrument were made to obtain equivalence, such as the expression "deaf or hard of hearing" translated only with the Italian word "sordo." During the cognitive debriefing, the clarity and comprehensibility of the items were reported by professionals and deaf adolescents. Eventually, the authors approved the final version.ConclusionThe YQOL-DHH was translated and culturally adapted into Italian. The translated items were pertinent to the Italian culture and equivalent to the original ones. A validation study is suggested to make the instrument feasible for use in different clinical or educational contexts. In addition, to guarantee accessibility and autonomy for young deaf signers, Italian Sign Language translation of the questionnaire is suggested.
| S-EPMC8671679 | biostudies-literature
Project description:BackgroundPectus excavatum often imposes significant burden on the patients' quality of life. However, despite the known biopsychosocial effects, the deformity remains underappreciated. Patient reported outcome measures can be used to measure and appreciate results from a patient's perspective. The pectus excavatum evaluation questionnaire (PEEQ) is the most employed disease specific instrument to measure patient-reported outcome measures (PROMs). A translation and linguistic validation of this questionnaire is presented for its use in the Dutch pediatric pectus excavatum population. By providing an insight in our translation process, we want to encourage other researchers to perform translations to other languages to make the questionnaire available to clinicians and researchers worldwide.MethodsThe 22-item PEEQ was translated and adapted according to the leading guidelines for the translation of patient reported outcome measures. Conceptual equivalence and cultural adaptation were emphasized.ResultsOne forward translation was produced through reconciliation of two forward translations. Back translation resulted in 15 identical items, as well as 6 literal, and 1 conceptual discrepancy. The latter was expected as during the forward translation a more culturally appropriate translation was chosen. Ten patients were involved during the cognitive debriefing process, following which one item was revised and the final Dutch version was established.ConclusionsWe provide a culturally appropriate and linguistically validated Dutch version of the PEEQ.
| S-EPMC9344429 | biostudies-literature
Project description:BackgroundRheumatic and Musculoskeletal Diseases (RMDs) substantially impact the lives of patients, with complex associations between disease severity and self-perceived health status. In this regard, the Coping with Rheumatic Stressors (CORS) questionnaire was developed to measure how patients with RMDs cope with stressors such as pain, limitations or dependency. The CORS is not currently available in Spanish, and therefore the adaptation of this instrument is needed.ObjectiveFirst, to cross-culturally adapt the CORS into Spanish for Spain. Secondly, to test the conceptual equivalence of the translated version in patients with axial spondyloarthritis (axSpA).MethodsA translation of the CORS into Spanish was performed adhering to the forward-backward procedure described by Beaton. Two translators produced independent forward translations of the item content, response options, and instructions of the CORS into Spanish. Both versions were harmonized in a consensual version. Another translator back-translated the synthesized version into Dutch. A scientific committee including all the translators, one methodologist and a rheumatologist, held a meeting and reached consensus on discrepancies to develop a final draft version of the Spanish CORS. Then, a field test with cognitive debriefing was conducted, involving a sample of 10 patients with axSpA.ResultsThe translation process of the CORS was completed after the discussion of some discrepancies throughout the process. The first translation was done without major complications. Back-translation presented some discrepancies. These led to minor modifications in the wording in one response option and 15 questionnaire items. The scientific committee agreed upon a final version of the questionnaire. Cognitive debriefing, led to minor modifications; for example, three respondents indicated that one of the statements in the instructions was syntactically complex ("indique cuán a menudo usted ha llevado a cabo dicho comportamiento") which led to its adjustment. The process indicated that the final CORS Spanish questionnaire was clear and understandable to all patients.ConclusionsThe Spanish version of the CORS showed good cross-cultural validity and good face validity according to the field test. Before the Spanish CORS is implemented, further validation is in progress to test the psychometric properties of the instrument in patients with axSpA.
| S-EPMC9925618 | biostudies-literature