Parent quality of life in the context of pediatric inflammatory bowel disease

Abstract

Objective: To describe the quality of life (QoL) of parents of youth with inflammatory bowel disease (IBD) and examine youth disease activity (DA) and youth QoL as predictors of parent QoL.

Methods: Forty-nine youth with IBD (ages 10-18) and a parent completed measures of demographics, parent QoL, and youth QoL. Youth DA ratings were obtained from medical records.

Results: Parental QoL was higher in several domains compared to the normative sample, with the greatest differences reported in physical functioning domains. Although patient demographic factors did not explain significant variance in parent QoL, greater DA was associated with lower parent QoL in mental health (MH) and physical health (PH) domains. Higher youth QoL was associated with higher parent QoL in the MH domain only.

Conclusions: Although as a group parental QoL was high, when youth are experiencing disease exacerbations or impaired QoL, parents may benefit from assessment and support.