Are parents able to rate the symptoms and quality of life of their offspring with IBD?

Abstract

The aim of this study was to investigate the degree of agreement between parents and their offspring with inflammatory bowel disease for the presence of symptoms and the assessment of health-related quality of life (HRQOL). Factors influencing parent-child agreement were studied. Eighty-three Children and 81 parents separately filled out a five-item symptom card and a validated generic HRQOL instrument, which assesses seven domains of HRQOL, using the child and parent form. The parent also filled out the GHQ-30, an instrument assessing nonpsychotic psychiatric disorder in the parent, and an item on marital status. Intraclass correlation coefficients and paired student t-test were used to assess the level of agreement between raters. On one domain, parents reported their children as having a worse QOL than did the children themselves (social functioning). The parents were adequate raters of objective components of their child's HRQOL (overall correlation coefficient: 0.88). However, on more subjective components, the coefficient dropped to 0.62. In 82% of the cases did parents correctly classify their child into the disease activity category the child classified him- or herself. In conclusion, agreement between parents and offspring is good for the child's symptoms, but for HRQOL assessment only when it concerns objective states.