Abstract
Objective
Health-related quality of life (HRQOL) is typically examined from a deficit standpoint, meaning that little is known about factors associated with higher HRQOL in pediatric illness samples. The aim of the current study was to investigate demographic, disease, and temperamental factors associated with child and parent-report of HRQOL in youth newly diagnosed with inflammatory bowel disease (IBD).
Methods
Participants included 52 youth ages 8–17 diagnosed with IBD and their caregivers who each completed ratings of the child’s HRQOL. Parents rated their child’s emotional reactivity, conceptualized as a temperamental risk factor, and adaptability, conceptualized as a temperamental protective factor. Disease symptoms were rated by youth, and physician global assessment of disease activity was obtained.
Results
HRQOL was rated lower by children and their parents as self-reported disease symptoms and parent-rated emotional reactivity increased. Conversely, total HRQOL was higher for children with higher parent-ratings of adaptability. In multiple regression analyses, higher levels of adaptability along with male sex and lower child-reported disease symptoms were associated with higher child and parent-reported HRQOL.
Conclusions
Higher HRQOL at time of diagnosis in pediatric IBD is associated with greater adaptability when accounting for variability due to child sex and disease symptoms. Consideration of temperament, including emotional reactivity and adaptability, may offer insight into patients’ typical ways of responding when stressed and provide preliminary information about factors related to post-diagnosis HRQOL. Attention should be given to both protective and risk factors to inform future intervention development, including strengths-based approaches.
EFFECT OF DARATUMUMAB, BORTEZOMIB, CYCLOPHOSPHAMIDE, AND DEXAMETHASONE ON CARDIAC FUNCTION AND HEALTH-RELATED QUALITY OF LIFE IN PATIENTS WITH NEWLY-DIAGNOSED AL AMYLOIDOSIS WITH CARDIAC INVOLVEMENT: RESULTS FROM THE PHASE 3 ANDROMEDA STUDY
