Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease
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The primary aim of this study was to examine the associations of disease activity and adolescent adjustment with parent and family health-related quality of life (HRQoL) among families of youths with inflammatory bowel disease (IBD). A secondary aim was to compare maternal and paternal perceptions of parent and family functioning.
Ninety-five primarily Caucasian families (92 mothers and 43 fathers) of youths with IBD ranging in age from 11 to 18 participated. Most adolescents were diagnosed with Crohn’s disease and had been diagnosed with IBD for several years at the time of the study. Parents completed the PedsQL Family Impact Module, while youths completed the Pediatric Symptoms Checklist. Disease activity ratings were obtained from medical records.
Multiple regression analyses suggested that disease activity was consistently associated with all father-reported outcomes and explained twice as much of the variance in father-reported parent and family HRQoL outcomes compared to mother-reported outcomes. In contrast, youth adjustment was consistently associated with all maternal outcomes but only one paternal outcome, and explained nearly twice as much variance in maternal-reported outcomes compared to paternal-reported outcomes. No significant differences between maternal and paternal reports of parent or family HRQoL were identified using independent samples t tests.
Although mothers and fathers report similar individual and family HRQoL, the strength of associations between disease and youth adjustment factors with these outcomes differs somewhat by parent gender. Findings underscore the importance of examining maternal and paternal functioning separately and incorporating routine family assessment into the course of treatment.
KeywordsPediatric chronic illness Inflammatory bowel disease Parent quality of life Family functioning
The authors would like to thank Lisa Liace, Frances Lorenzi, Carrie Massura, Rachel Mirecki, Sara Lamb, Erica Swanson, and Tara Raboin for their assistance with data collection and data entry for this project, and members of the Milwaukee Area Child Health Research Initiative for their comments on an earlier version of this manuscript. This research was partially supported by a 2008 Children’s Research Institute Pilot Innovation Research Award to Rachel Neff Greenley. Finally, we wish to thank the participating families, as well as the Division of Pediatric Gastroenterology faculty and staff at Medical College of Wisconsin and Children’s Hospital of Wisconsin for support with participant recruitment. The Quality of Life study described in this paper was carried out using the PedsQLTM, Family Impact Module developed by Dr. James W. Varni.
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