Agreement between children with cancer and their parents in reporting the child's health-related quality of life during a stay at the hospital and at home

Abstract

Background: Although parent-child agreement is widely studied in the paediatric clinical sample, no study has compared parent-child agreement during home and hospital stays. We aimed to determine the level of agreement in reports of health-related quality of life (HRQoL) between parents of children with cancer and the children themselves during a stay in the hospital and a stay at home.

Methods: The sample consisted of 28 children, aged 9-18 years old, hospitalized and treated for cancer in a Children's University Hospital in France. The child's HRQoL was assessed by the parent and child versions of the Child Health Questionnaire. Parent-child agreement was estimated by the intraclass correlation coefficient. Potential predictors influencing the parent-child agreement were investigated.

Results: For both locations of stay, parent scores from the HRQoL survey were lower than those for their children for all domains, except for the general behaviour during the home stay. Scores for both parents and children, for all domains, were lower during the hospital than the home stay. The parent-child agreement was better for mental health, self-esteem, general health and family activities during the hospital stay (range 0.32-0.66), but was better for physical function, role/physical and general behaviour during the home stay (range 0.45-0.71). Few predictors of parent-child agreement were found.

Conclusions: Agreement between parents and their children who have cancer in reporting the child's HRQoL differed by location of stay. For the home stay, the agreement was better for domains related to the child's physical life, but for the hospital stay, it was better for domains related to the child's behaviour/psychological life.