OBJECTIVE: The aim was to test the performance of a cross-culturally developed disease-generic quality of life (QoL) measure for children with chronic diseases in a multinational clinical study. STUDY DESIGN AND SETTING: The study was conducted in pediatric hospitals across seven European countries in a sample of 1,153 children with seven chronic conditions, aged 8-16. The design included test and retest on child, parent, and clinical measures concerning health status, functioning, and quality of life. RESULTS: The condition-generic QoL measure showed satisfactory item and scale performance, as well as structural validity across the seven countries. There was a high agreement between the child and proxy assessment across the different countries in all subscales of the condition-generic instrument, except for socioemotional dimensions in some countries. Gender, age, and severity-adjusted covariance analyses showed significant country differences in QoL. The discriminative potential of the condition-generic measure to distinguish between clinical characteristics was higher than that of a generic measures. CONCLUSION: The psychometric performance of both items and scales of the DISABKIDS condition oriented measure was good across cultures, despite a range of cross-cultural differences. The condition-generic measure performs better in discriminating with respect to clinical characteristics than the generic measures; however, results need replication in representative studies.
OBJECTIVE: The aim was to test the performance of a cross-culturally developed disease-generic quality of life (QoL) measure for children with chronic diseases in a multinational clinical study. STUDY DESIGN AND SETTING: The study was conducted in pediatric hospitals across seven European countries in a sample of 1,153 children with seven chronic conditions, aged 8-16. The design included test and retest on child, parent, and clinical measures concerning health status, functioning, and quality of life. RESULTS: The condition-generic QoL measure showed satisfactory item and scale performance, as well as structural validity across the seven countries. There was a high agreement between the child and proxy assessment across the different countries in all subscales of the condition-generic instrument, except for socioemotional dimensions in some countries. Gender, age, and severity-adjusted covariance analyses showed significant country differences in QoL. The discriminative potential of the condition-generic measure to distinguish between clinical characteristics was higher than that of a generic measures. CONCLUSION: The psychometric performance of both items and scales of the DISABKIDS condition oriented measure was good across cultures, despite a range of cross-cultural differences. The condition-generic measure performs better in discriminating with respect to clinical characteristics than the generic measures; however, results need replication in representative studies.
Authors: Neil W Scott; Peter M Fayers; Neil K Aaronson; Andrew Bottomley; Alexander de Graeff; Mogens Groenvold; Chad Gundy; Michael Koller; Morten A Petersen; Mirjam A G Sprangers Journal: Health Qual Life Outcomes Date: 2010-08-04 Impact factor: 3.186
Authors: Marie-Claude Simeoni; Silke Schmidt; Holger Muehlan; David Debensason; Monika Bullinger Journal: Qual Life Res Date: 2007-04-03 Impact factor: 3.440
Authors: Pamela L Wolters; Ana-Maria Vranceanu; Heather L Thompson; Staci Martin; Vanessa L Merker; Andrea Baldwin; Carolina Barnett; Kimberley S Koetsier; Cynthia M Hingtgen; Christopher J Funes; James H Tonsgard; Elizabeth K Schorry; Taryn Allen; Taylor Smith; Barbara Franklin; Stephanie Reeve Journal: Neurology Date: 2021-07-06 Impact factor: 11.800