Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module

Marie Claude Simeoni; Silke Schmidt; Holger Muehlan; David Debensason; Monika Bullinger; Corinna Petersen; Michael Quittan; Othmar Schuhfried; Delphine Orbicini; Ute Thyen; Esther Müller-Godeffroy; Athanasios Vidalis; John Tsanakas; Elpis Hatziagorou; Paraskevi Karagianni; Hendrik Koopman; Rolanda Baars; John Eric Chaplin; Mick Power; Clare Atherton; Peter Hoare

doi:10.1007/s11136-007-9188-2

Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module

Marie Claude Simeoni^*, Silke Schmidt, Holger Muehlan, David Debensason, Monika Bullinger, Corinna Petersen, Michael Quittan, Othmar Schuhfried, Delphine Orbicini, Ute Thyen, Esther Müller-Godeffroy, Athanasios Vidalis, John Tsanakas, Elpis Hatziagorou, Paraskevi Karagianni, Hendrik Koopman, Rolanda Baars, John Eric Chaplin, Mick Power, Clare AthertonPeter Hoare

^*Corresponding author for this work

Department of Pediatric and Adolescent Medicine

126 Citations (Scopus)

Abstract

Objectives: The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design: 1153 children and adolescents (8-16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results: The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach's alpha: 0.70-0.87) and test-retest reliability (ICC: 0.71-0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion: Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.

Original language	English
Journal	Quality of Life Research
Volume	16
Issue number	5
Pages (from-to)	881-893
Number of pages	13
ISSN	0962-9343
DOIs	https://doi.org/10.1007/s11136-007-9188-2
Publication status	Published - 06.2007

Funding

Acknowledgements The DISABKIDS project was supported by the European Commission (QLG5-CT-2000-00716) within the Fifth Framework Program ‘‘Quality of Life and Management of Living Resources’’.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being
SDG 10 Reduced Inequalities

Research Areas and Centers

Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)

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10.1007/s11136-007-9188-2

Cite this

Simeoni, M. C., Schmidt, S., Muehlan, H., Debensason, D., Bullinger, M., Petersen, C., Quittan, M., Schuhfried, O., Orbicini, D., Thyen, U., Müller-Godeffroy, E., Vidalis, A., Tsanakas, J., Hatziagorou, E., Karagianni, P., Koopman, H., Baars, R., Chaplin, J. E., Power, M., ... Hoare, P. (2007). Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module. Quality of Life Research, 16(5), 881-893. https://doi.org/10.1007/s11136-007-9188-2

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title = "Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module",

abstract = "Objectives: The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design: 1153 children and adolescents (8-16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results: The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach's alpha: 0.70-0.87) and test-retest reliability (ICC: 0.71-0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion: Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.",

author = "Simeoni, \{Marie Claude\} and Silke Schmidt and Holger Muehlan and David Debensason and Monika Bullinger and Corinna Petersen and Michael Quittan and Othmar Schuhfried and Delphine Orbicini and Ute Thyen and Esther M{\"u}ller-Godeffroy and Athanasios Vidalis and John Tsanakas and Elpis Hatziagorou and Paraskevi Karagianni and Hendrik Koopman and Rolanda Baars and Chaplin, \{John Eric\} and Mick Power and Clare Atherton and Peter Hoare",

note = "Funding Information: Acknowledgements The DISABKIDS project was supported by the European Commission (QLG5-CT-2000-00716) within the Fifth Framework Program {\textquoteleft}{\textquoteleft}Quality of Life and Management of Living Resources{\textquoteright}{\textquoteright}. Copyright: Copyright 2011 Elsevier B.V., All rights reserved.",

year = "2007",

month = jun,

doi = "10.1007/s11136-007-9188-2",

language = "English",

volume = "16",

pages = "881--893",

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Simeoni, MC, Schmidt, S, Muehlan, H, Debensason, D, Bullinger, M, Petersen, C, Quittan, M, Schuhfried, O, Orbicini, D, Thyen, U, Müller-Godeffroy, E, Vidalis, A, Tsanakas, J, Hatziagorou, E, Karagianni, P, Koopman, H, Baars, R, Chaplin, JE, Power, M, Atherton, C & Hoare, P 2007, 'Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module', Quality of Life Research, vol. 16, no. 5, pp. 881-893. https://doi.org/10.1007/s11136-007-9188-2

TY - JOUR

T1 - Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module

AU - Simeoni, Marie Claude

AU - Schmidt, Silke

AU - Muehlan, Holger

AU - Debensason, David

AU - Bullinger, Monika

AU - Petersen, Corinna

AU - Quittan, Michael

AU - Schuhfried, Othmar

AU - Orbicini, Delphine

AU - Thyen, Ute

AU - Müller-Godeffroy, Esther

AU - Vidalis, Athanasios

AU - Tsanakas, John

AU - Hatziagorou, Elpis

AU - Karagianni, Paraskevi

AU - Koopman, Hendrik

AU - Baars, Rolanda

AU - Chaplin, John Eric

AU - Power, Mick

AU - Atherton, Clare

AU - Hoare, Peter

N1 - Funding Information: Acknowledgements The DISABKIDS project was supported by the European Commission (QLG5-CT-2000-00716) within the Fifth Framework Program ‘‘Quality of Life and Management of Living Resources’’. Copyright: Copyright 2011 Elsevier B.V., All rights reserved.

PY - 2007/6

Y1 - 2007/6

N2 - Objectives: The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design: 1153 children and adolescents (8-16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results: The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach's alpha: 0.70-0.87) and test-retest reliability (ICC: 0.71-0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion: Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.

AB - Objectives: The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design: 1153 children and adolescents (8-16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results: The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach's alpha: 0.70-0.87) and test-retest reliability (ICC: 0.71-0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion: Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.

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DO - 10.1007/s11136-007-9188-2

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C2 - 17404899

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SN - 0962-9343

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ER -

Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module

Abstract

Funding

UN SDGs

Research Areas and Centers

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