Health-related quality of life in children with cystic fibrosis: validation of the German CFQ-R

Schmidt, Anne; Wenninger, Kerstin; Niemann, Nadja; Wahn, Ulrich; Staab, Doris

doi:10.1186/1477-7525-7-97

Cited by 32 publications

(47 citation statements)

References 42 publications

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“…In the recently published FDA Guidance, parent proxy measures were recommended only for symptoms and behaviors that can be observed by parents [1]. Our findings, and those reported in Belgium and Germany [30,31], also show that children reported worse emotional functioning than their parents were aware of, suggesting that measuring both respondents' perceptions of HRQOL is important. The CFQ-R is one of the few PRO tools with a validated version for children.…”

Section: Discussionsupporting

confidence: 65%

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: Discussionsupporting

confidence: 65%

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

et al. 2012

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“…40,41 Of note, girls with CF have reported more emotional symptoms and greater pain, spend more time in the hospital than boys with a similar level of illness, [41][42][43] and have a worse prognosis than boys. [44][45][46][47][48] Our findings suggest that boys may emphasize taking responsibility for their treatments and maintaining a positive attitude, whereas some girls expressed the value of sharing responsibility for their health management with, for example, their parent or doctor.…”

Section: Discussionmentioning

confidence: 99%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

et al. 2014

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“…International studies on HRQOL in children are needed to gain a better understanding of the impact of public policies, interventions, therapies (Schmidt, Wenninger, Niemann, Wahn, & Staab, 2009), evaluation of interventions, and the prediction of health and social care need (Sabbah et al, 2003;Hatzmann, Maurice-Stam, Heymans, & Grootenhuis, 2009;Panepinto, Hoffmann, & Pajewski, 2009).…”

Section: Introductionmentioning

confidence: 99%

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales for Young Child (5 - 7 years), and Child Aged 8 - 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

Sabbah¹,

Sabbah²,

Sabbah³

et al. 2012

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Background:Health-related quality of life (HRQOL) is recognized as an important health outcome measurement for pediatric patients. HRQOL in children is needed to gain a better understanding of the impact of public policies, interventions, therapies, and the prediction of health and social care need. In view of the lack of reliable HRQOL instruments for children in Arabic, the present study aims to translate the PedsQL TM 4.0 self-report and proxy-report for young child (aged 5 -7 years), and child (aged 8 -12 years), evaluate psychometric properties of the Arabic Lebanon version; and to evaluate HRQOL of children in rural and urban areas in Lebanon. Methods: PedsQL TM 4.0 was translated and adapted into Arabic using the standard approach provided by Varni J. W. The Arabic version was administered to a representative sample of 368 children aged 5 -12 years and their parents. The psychometric properties were then evaluated. Results: The rate of missing data for self-report and proxy-report was very low (0.51% and 0.46% of items). All child self-report, and parent proxy-report subscales exceeded the minimum reliability standard of 0.70 for alpha coefficient, except emotional subscale of young child self-report and proxy-report, and, the social subscale of child self-report (alphas ranging from 0.60 to 0.66). Factor analysis yielded patterns of factor correlation comparable to the original version. The emotional functioning of children is low, where most children feel afraid, sad, and angry. Children resident in rural areas had higher social scores than those in urban areas. The HRQOL of girls is higher than boys; Children undergoing treatment for cancer rated their HRQOL as poorer in all dimensions. Conclusions: The results support the validity of the PedsQL TM 4.0 self-report and proxy-report Arabic version. Habitat has a minor influence on HRQOL of children. Further psychometric evaluation in a larger sample of children, in other departments of Lebanon is recommended to provide firmer conclusions.

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Health-related quality of life in children with cystic fibrosis: validation of the German CFQ-R

Cited by 32 publications

References 42 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

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales for Young Child (5 - 7 years), and Child Aged 8 - 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

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