Disease Activity Does Not Explain It All: How Internalizing Symptoms and Caregiver Depressive Symptoms Relate to Health-related Quality of Life Among Youth with Inflammatory Bowel Disease.

BACKGROUND: Health-related quality of life (HRQoL) is a multidimensional constructinfluenced by disease, individual, and environmental factors. Greater disease activity (DA) predicts poorer HRQoL, but disease status alone does not fully account for individual variability in HRQoL. This investigation tested the role of patient and caregiver internalizing symptoms in explaining the relationship between DA and patient HRQoL.
METHODS: Participants included 83 subjects aged 11 to 18 diagnosed with inflammatory bowel disease and their caregiver. Patients reported on their HRQoL. Caregivers rated their own depressive symptoms and patients' internalizing symptoms (depression, anxiety, and somatization). Physicians rated DA.
RESULTS: Greater DA was positively associated with subjects' internalizing symptoms and negatively associated with HRQoL. Mediation analyses found support for significant indirect effects on the relationship between DA and HRQoL through the subjects' internalizing symptoms, through their internalizing symptoms and caregivers' depressive symptoms, sequentially.
CONCLUSIONS: Greater DA independently relates to poorer HRQoL. In addition, DA relates to greater child internalizing problems which in turn relate to higher levels of caregiver depressive symptoms and poorer HRQoL. Providers may consider a family-based approach to screen for internalizing problems, especially in patients with active disease, because caregiver and child mood symptoms may partially explain worsening child HRQoL.