Untitled

Abstract

A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions: is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.

The impact of the oral condition of children with sickle cell disease on family quality of life

“…22,23,24 It is believed that an older age improves communication between the parent and the child. 25 Parental concern about the jealousy of other family members was significantly greater among parents of adolescent (p < 0.05), although this item was not frequently endorsed on the FIS. Adolescence heightens the difficulty of adaptation and adjustment needed by SCD patients; 26 this factor may have contributed to enhancing the perception of parents of adolescents.…”

Child and parental adaptation to pediatric stem cell transplantation

“…It is possible that our follow-up period post-SCT was too short to detect any time effects and needs to be extended in further studies. Differences in child and proxy evaluations of HRQoL have been reported by many other researchers [10,14,32]. A first explanation could be that parent and child reports of HRQoL are based on different perspectives: the child reports on his or her subjective personal situation, whereas parents can only infer from observations and communication with the child [23].…”

“…Furthermore, the fear of relapse remains and makes parents vulnerable to stress and could be reflected in the lower rating of the domain "home functioning" by both parents and children, post-SCT. Given the strong relationship between maternal ratings of the child's functioning with ratings of her own functioning, ideally dyadic ratings of both parents and children should be used as much as possible to determine pediatric HRQoL in clinical settings [14,36].…”

“…Larger time intervals and multiple assessments are needed to study the process of HRQoL and parenting stress in time in more depth. Proxy data can provide significantly different information than self-reported data, especially for adolescents [10,18]; hence, consulting the child's own perception next to the parent's view when measuring HRQoL is necessary [14]. We strongly recommend ongoing psychological assessment pre-and post-SCT in order to target children who report lowered HRQoL scores pre-SCT and/or post-SCT and parents who experience high levels of parenting stress who may be in greater need of preventive interventions or more supportive care, not only during the active SCT phase, but also in the months following discharge.…”

“…Parent-child agreement seems to be influenced by the child's age with older age predicting greater differences, health status (a higher agreement has been found between parents and chronically sick children than between parents and healthy children), the types of the HRQoL domains investigated (i.e., a higher agreement for physical aspects of health versus emotional aspects) [12,14], parental QoL [17], and maternal affective disturbances [6,13]. To our knowledge, the influence of parenting stress on proxy-rated HRQoL has not been studied so far.…”