Translation and Linguistic Validation of a Disease-Specific Quality of Life Measure for Cystic Fibrosis

Quittner, Alexandra L.; Sweeny, Sheri; Watrous, Marc; Munzenberger, Paul J.; Bearss, Karen; Nitza, Amy; Fisher, Lisa A.; Henry, Bernadette

doi:10.1093/jpepsy/25.6.403

Cited by 140 publications

(132 citation statements)

References 23 publications

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“…Its development began with a conceptual framework that included both disease-specific and generic domains, followed by qualitative interviews with patients, parents, and health care professionals. Cognitive testing of the items was then performed with revisions to the items and scales as necessary [19][20][21].…”

Section: Introductionmentioning

confidence: 99%

Erratum to: Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national, US sample

et al. 2012

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Purpose The psychometric properties of a health-related quality of life (HRQOL) instrument, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), were evaluated in a national, US sample of patients with cystic fibrosis (CF). This is the first psychometric evaluation of the revised version of this instrument.Methods The Epidemiologic Study of CF is a national, US multicenter longitudinal cohort study containing CFQ-R and health outcomes data. Developmentally appropriate versions of the CFQ-R were available from 7,330 patients aged 6-70 years and a proxy version from 2,728 parents of schoolage children. The CFQ-R was completed during a ''stable'' or ''sick'' visit before recording health outcomes such as weight, lung function, and pulmonary exacerbations. Results There were few floor and ceiling effects and strong internal consistency (Cronbach alpha C0.70) for most scales. The CFQ-R consistently discriminated between patients seen for sick-versus-well visits, and among stages of disease severity based on lung function. As predicted, women with CF reported worse HRQOL than men on scales not related to body image and weight. Strong parent-child agreement was found on scales measuring observable behaviors (respiratory symptoms). Convergence between CFQ-R scales and health outcomes provided evidence of construct validity.Conclusions The CFQ-R demonstrated robust psychometric properties and consistent associations with health outcomes in a large national, US sample. Normative data are available to aid in interpretation.

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Section: Introductionmentioning

confidence: 99%

Erratum to: Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national, US sample

et al. 2012

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“…In order that HRQL can be quantified in countries with cultures and languages different from the country where questionnaires have been produced, it is recommended that translated instruments be validated and adapted for the conditions in the country where they are to be used. [10][11][12][13][14] This is the ICC is the adequate test to evaluate reproducibility, with values equal or above 0.7 24 and for CFQs the acceptable level is 0.6 or above. 16 During the validation process we observed that, with the exception of two domains, the Digestion for age groups from 6 to 13 years and the Social Role domain for patients 14 years and over, all other domains had ICC values over 0.6.…”

Section: Discussionmentioning

confidence: 99%

“…The four final CFQ versions were then produced in Portuguese and named CFQ [6][7][8][9][10][11] , CFQ 12-13 CFQ 14+ and CFQ (the full texts of the questionnaires are available online at www.jped.com.br/ing).…”

Section: Validation Protocolmentioning

confidence: 99%

“…[4][5][6][7][8][9] Some of these questionnaires have been validated in several different languages over the last ten years. [10][11][12] A suite of questionnaires originally developed and validated in France in 1996 are of most interest since they cover individuals from childhood to adulthood. 13 These questionnaires were later translated into English and validated with a good level of consistency being observed 10 plus the added advantage of being applicable to younger children.…”

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confidence: 99%

“…[10][11][12] A suite of questionnaires originally developed and validated in France in 1996 are of most interest since they cover individuals from childhood to adulthood. 13 These questionnaires were later translated into English and validated with a good level of consistency being observed 10 plus the added advantage of being applicable to younger children. 12 Recently, they have been validated in German, 11 has not yet been assessed in Brazil because of the lack of reliable, internationally accepted and validated instruments.…”

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confidence: 99%

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Validação lingüística dos questionários de qualidade de vida em fibrose cística

Rozov¹,

Cunha²,

Nascimento³

et al. 2006

J. Pediatr. (Rio J.)

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Objective: The purpose of this study was to validate the Portuguese translations of four cystic fibrosis quality of life questionnaires (CFQ). The first three were developed for patients with cystic fibrosis aged from 6 to 11 years, from 12 to 13 years and 14 years or more, while the fourth was developed for the parents of patients aged 6 to 13 years. Material and methods:The four CFQ translations contained from 35 to 50 questions covering nine domains and were validated as follows: translation from English to Portuguese, pilot application, back translation and then approval by the author of the English versions. The four translations were applied to 90 stable patients (30 from each age group) and the parents of patients aged 6-13 years (n = 60), on two occasions with a 13 to 17 day interval. Intraclass Correlation Coefficients (ICC) were used to measure reproducibility. This study was approved by the Commission for Ethics in Research at the institution.Results: Reproducibility was good (ICC = 0.62 to 0.99) for the four translations in all domains, with the exceptions of the Digestion domain for the 6 to 11 and 12 to 13 years age groups with ICC = 0.59 and 0.47, respectively and the Social Role domain for the 14 and over age group (ICC = -0.19 ). Conclusion:The translation and cultural adaptation for Brazil resulted in four CFQ versions that are easy to understand and offer good reproducibility.J Pediatr (Rio J). 2006;82(2):151-6: Questionnaires, quality of life, cystic fibrosis, validation.

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Inhaled Hypertonic Saline in Infants and Children Younger Than 6 Years With Cystic Fibrosis

Rosenfeld

Ratjen

Brumback

et al. 2012

JAMA

172

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Translation and Linguistic Validation of a Disease-Specific Quality of Life Measure for Cystic Fibrosis

Abstract: The English version of the CFQ appears to be a linguistically valid measure of quality of life for patients with CF. A national validation study is now under way to test the psychometric properties of the measure.

Cited by 140 publications

References 23 publications

Erratum to: Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national, US sample

Erratum to: Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national, US sample

Validação lingüística dos questionários de qualidade de vida em fibrose cística

Inhaled Hypertonic Saline in Infants and Children Younger Than 6 Years With Cystic Fibrosis

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