title: Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).
abstract: Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice.
  
  
  OBJECTIVE
  The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY.
  
  
  METHODS
  The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison.
  
  
  RESULTS
  There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors.
  
  
  CONCLUSIONS
  In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.
authors: Jonkoping University, The Jonkoping Academy for Improvement of Health and Welfare, Box 1026, s-55111 Jonkoping, Sweden. christina.peterson@hhj.hj.se
authors: Christina
authors: C
authors: Petersson
authors: Rune J
authors: RJ
authors: Simeonsson
authors: Karin
authors: K
authors: Enskar
authors: Karina
authors: K
authors: Huus
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D019988:Children with Disabilities; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D011159:Population Surveillance / Q000379:methods*; D011594:Psychometrics; D011788:Quality of Life; D012042:Registries; D057566:Self Report / Q000592:standards*; D013548:Sweden
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