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The quality of life in epidermolysis bullosa (EB-QoL) questionnaire: Translation, cultural adaptation, and validation into the Farsi language

ABSTRACT: Background Defining the quality of life in the patients with epidermolysis bullosa (EB) is important in patient care and management. Evaluation of quality of life requires a valid and reliable scale. The Quality of Life in Epidermolysis Bullosa (EB-QoL) questionnaire, which is an English 17-item questionnaire, has emerged as a useful tool for assessing the quality of life in the patients with EB. Objective This study aimed to evaluate the psychometric properties of the Farsi version of the EB-QoL questionnaire among a group of Iranian patients with EB. Methods The Farsi version of the EB-QoL questionnaire was finalized after translation and back-translation. From the 100 patients with EB invited to participate in the study, 83 completed the questionnaire (response rate: 83%). Subsequently, the content validity and construct validity of the questionnaire were assessed. The reliability of the questionnaire was assessed with Cronbach's alpha. Moreover, the correlation between EB-QoL scores and EB severity scores (based on the Birmingham Epidermolysis bullosa severity score scale) was evaluated. Results A total of 83 patients (40 male and 43 female) with a median age of 15?years (interquartile range, 9–24?years) and an age range between 3 and 43?years were enrolled in this study. Mean?±?standard deviation scores from the EB-QoL questionnaire were 43.7?±?9.9. The translated EB-QoL questionnaire showed a high internal consistency (Cronbach alpha?=?0.90) and adequate item-total correlation. Also, there was a significant correlation between EB-QoL and EB severity scores (r?=?0.39; p?

SUBMITTER: Yazdanshenas A

PROVIDER: S-EPMC7522813 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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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 ? ?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.

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The quality of life in epidermolysis bullosa (EB-QoL) questionnaire: Translation, cultural adaptation, and validation into the Farsi language

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