Health‐Related Quality of Life in Youth With Crohn Disease

Abstract

Objectives Health-related quality of life (HRQOL) is an important, but understudied construct in pediatric IBD. Family-level predictors of HRQOL have been understudied as are the mechanisms through which disease activity impacts HRQOL. The current study examines the relationship between a family-level factor (parenting stress) and HRQOL in youth with Crohn's disease. Parenting stress is examined as a mechanism through with disease activity impacts HRQOL. Methods 99 adolescents with Crohn's disease and their parents were recruited across three sites. Adolescents completed the IMPACT-III (IBD-specific HRQOL). Parents completed the Pediatric Inventory for Parents, a measure of medically-related parenting stress that assesses: 1) stress due to the occurrence of medical stressors and 2) stress due to the perceived difficulty of stressors. Disease activity was obtained from medical records. Results Parenting stress due to the occurrence of medical stressors partially mediated the disease severity-HRQOL relationship, reducing the relationship between these variables from 49.67% to 31.58% (B = -.56, p <.0001). Boot strapping analysis confirmed that the indirect effect of disease severity on HQROL via parenting stress significantly differed from zero. Parenting stress due to the perceived difficulty of medical stressors partially mediated the disease severity-HRQOL relationship, reducing the relationship from 49.67% to 30.29% (B = -.55, p < .0001). The indirect effect was confirmed via bootstrapping procedures. Conclusions As disease severity increased, parenting stress also increased, and adolescent HRQOL decreased. Parenting stress should be considered and assessed for along with medical factors as part of a comprehensive approach to improving HRQOL in adolescents with Crohn's disease.

Diagnosis and management of inflammatory bowel disease in children

“…139 A multicenter observational study of 99 adolescents with Crohn's disease concluded that disease severity increased parental stress and affected the patient's QOL. 140 A multidisciplinary approach, coordinated to occur during the same visit, is the optimal approach for patients tion. For this reason, serological screening for immunity to Epstein-Barr virus should be considered at diagnosis of IBD to guide the decision making process for treatment and to increase watchfulness in case of a future primary infection.…”

Instrumente zur Messung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen mit chronisch-entzündlichen Darmerkrankungen – Systematisches Review und qualitative Analyse

“…Die Krankheitsaktivität wurde mehrfach als signifikanter Einflussfaktor bezogen auf die HRQoL eingestuft (z. B. Cohen's d (IMPACT-III Gesamtwert) = 0,72; p = 0,000 [15]) [16,22,26,28,30,31,32,33]. In diesem Zusammenhang ist auch zu erwähnen, dass die Krankheitsaktivität mit zunehmender Erkrankungsdauer sinkt (Pearson-Korrelation, r = 0,15; p = 0,05) und damit wiederum eine höhere HRQoL der Dimension Darmsymptome verknüpft ist.…”

“…Auch die schulische Lebensqualität als Teildimension der HRQoL im PedsQL-Fragebogen ist bei Jugendlichen mit verheirateten Eltern deutlich höher (Mittelwert = 74,18 versus 57,50; p < 0,01) [35]. Zudem beeinflusst die Krankheitsaktivität die HRQoL über den Kofaktor elterlichen Stress [31]. Die HRQoL der an CED erkrankten Jugendlichen ist insbesondere bezogen auf die Teildimension der alltäglichen Aktivitäten, z.…”

“…Letztlich zeigen die Studien, dass die HRQoL der jungen CED-Patienten meist weder mit der eigenen körperlichen Aktivität [38] noch mit sozio-demographischen Faktoren [26,27,29,31,33,36] im statistischen Zusammenhang steht. So zeigt sich z.…”

Role of HLA typing on Crohn's disease pathogenesis

“…The precise causes of Crohn's Disease are not well understood. It is a multifactorial disease including hereditary, genetics, and/or environmental factors inaddition to diet and stress may aggravate Crohn's Disease [8] .…”