Health-related quality of life of youth with inflammatory bowel disease: a comparison with published data using the PedsQL 4.0 generic core scales.
BACKGROUND
This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL.


METHODS
One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs).


RESULTS
Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning.


CONCLUSIONS
Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL.
Kunz
Jennifer Hauser
JH
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin 53226, USA. JHauser@mcw.edu
Hommel
Kevin A
KA
Greenley
Rachel Neff
RN
D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000188:drug therapy / Q000523:psychology*; D007398:Interpersonal Relations; D008297:Male; D015122:Mercaptopurine / Q000031:analogs & derivatives / Q000627:therapeutic use; D019804:Mesalamine / Q000627:therapeutic use; D008778:Methylthioinosine / Q000627:therapeutic use; D008875:Middle Aged; D010290:Parents / Q000523:psychology; D011788:Quality of Life / Q000523:psychology*; D012649:Self Concept; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D012917:Social Adjustment; D013866:Thioguanine / Q000627:therapeutic use
C488629:azathiopurine; D008778:Methylthioinosine; D019804:Mesalamine; D015122:Mercaptopurine; D013866:Thioguanine