Spanish adaptation and validation of the child- and parent-report cystic fibrosis questionnaire-revised (CFQ-R).

OBJECTIVE: To evaluate the psychometric properties of the Spanish versions of the child- and parent-report cystic fibrosis questionnaire-revised (CFQ-R). METHODS: A Spanish adaptation of the CFQ-R was performed; 68 children with CF (6-13 years) and their parents completed the child- and parent-report CFQ-R, respectively, and the Revidierter KINDer Lebensqualitätsfragebogen (KINDL) questionnaire. The CFQ-R was completed twice, 7-10 days apart, and its psychometric properties were analyzed. RESULTS: The internal consistency of both CFQ-R versions was adequate (child-report version, Cronbach's α >.60 for all domains except "Treatment Burden" [α = .42] and "Social Functioning" [α = .57]; parent-report version, α > .60 for all domains except "Social Functioning" [α = .58]). For the child-report version, the lowest measurement error was for "Emotional Functioning" (standard error of measurement [SEM]: 8.3%; minimal detectable change [MDC90 ]: 19.3%), and the highest was for "Body Image" (SEM: 15%; MDC90 : 35%). For the parent-report version, the lowest measurement error was for "Physical Functioning" (SEM: 7.1%; MDC90 : 16.5%), and the highest was for "Weight" (SEM: 17.2%; MDC90 ; 40.1%). The correlation between the versions showed higher agreement for the domains related to observable signs ("Physical Functioning") and lower agreement for "Emotional Functioning." There was a significant correlation between the CFQ-R and KINDL. CONCLUSION: Both the child- and parent-report versions of the Spanish CFQ-R have adequate reliability and validity for clinical and research purposes. These versions can be administered before and after starting modulator therapy to assess its effect on daily functioning. The MDC90 can help identify, with a high probability, whether real changes have occurred in the quality-of-life subscales in children with CF.

Herramientas de evaluación de calidad de vida y tolerancia al ejercicio en niños y adolescentes con fibrosis quística: revisión sistemática / Quality of life and exercise tolerance tools in children/adolescents with cystic fibrosis: Systematic review

Introducción:La presente revisión sistemática analiza la validez y la fiabilidad de las herramientas para valorar la calidad de vida relacionada con la salud (CVRS) y la tolerancia al ejercicio en niños y adolescentes con fibrosis quística (FQ).Materiales y métodos:Se ha realizado una revisión de estudios observacionales que estudien la validez y la fiabilidad de las herramientas, analizando su calidad según la guía COnsesus-based Standards for the selection of health Measurements INstruments (COSMIN).Resultados:Se seleccionaron un total de 18 estudios. De los ocho instrumentos sobre CVRS, cinco genéricos y tres específicos, analizados en 14 estudios, el Cystic Fibrosis Questionnaire-Revised (CFQ-R) presenta las mejores propiedades. De las cuatro herramientas analizadas para evaluar la tolerancia al ejercicio, la cicloergometría y el test lanzadera modificado son las más válidas y fiables.Conclusiones:El CFQ-R, la cicloergometría y el test lanzadera modificado presentan las mejores propiedades para la evaluación de niños con FQ, pero son necesarios más estudios. (AU)

Introduction:This systematic review aims to analyze the validity and reliability of available tools to assess health-related quality of life (HRQoL) and exercise tolerance in children and adolescents with cystic fibrosis (CF).Materials and methods:A review of observational studies studying the validity and reliability of the tools was conducted. The COSMIN (COnsesus-based Standards for the selection of health Measurements INstruments) guide was followed to analyze the quality of these tools.Results:A total of 18 studies were selected. Of the eight HRQoL tools, five generic and three specific, analyzed in 14 studies, the Cystic Fibrosis Questionnaire-Revised (CFQ-R) presents the best properties. Of the four tools analyzed to assess exercise tolerance, cycle ergometry and the modified shuttle test are the most valid and reliable.Conclusions:The CFQ-R, cycloergometry and the modified shuttle test have the best properties for the assessment of children with CF, but more studies are needed. (AU)

[Quality of life and exercise tolerance tools in children/adolescents with cystic fibrosis: Systematic review]. / Herramientas de evaluación de calidad de vida y tolerancia al ejercicio en niños y adolescentes con fibrosis quística: revisión sistemática.

INTRODUCTION: This systematic review aims to analyze the validity and reliability of available tools to assess health-related quality of life (HRQoL) and exercise tolerance in children and adolescents with cystic fibrosis (CF). MATERIALS AND METHODS: A review of observational studies studying the validity and reliability of the tools was conducted. The COSMIN (COnsesus-based Standards for the selection of health Measurements INstruments) guide was followed to analyze the quality of these tools. RESULTS: A total of 18 studies were selected. Of the eight HRQoL tools, five generic and three specific, analyzed in 14 studies, the Cystic Fibrosis Questionnaire-Revised (CFQ-R) presents the best properties. Of the four tools analyzed to assess exercise tolerance, cycle ergometry and the modified shuttle test are the most valid and reliable. CONCLUSIONS: The CFQ-R, cycloergometry and the modified shuttle test have the best properties for the assessment of children with CF, but more studies are needed.