A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions.

Health-related quality of life is an important outcome. Self-report is the gold standard, but in the paediatric setting we often rely on proxy reporting. Our understanding of the differences between self- and proxy reports and the factors that influence them is limited. These differences can impact on treatment choices and the patient-doctor relationship. To evaluate differences between children's, parents' and doctors' perceptions of health states and health-related quality of life in children with chronic illness and explore factors which explain these differences. Consecutive families attending eligible clinics at a tertiary paediatric centre were invited to complete the Health Utilities Index (HUI) 23 questionnaire. Percentage agreement and kappas were calculated as a measure of the agreement between pairs. Chi-squared tests or Fisher's exact test, if appropriate, were performed to determine if there was an association between level of agreement and participant variables. Data were collected for 130 parent-doctor pairs, 59 child-parent pairs and 59 child-doctor pairs. Overall health-related quality of life scores did not differ between responders, but there was poorer agreement for subjective domains. Doctor-child agreement was lower than parent-child agreement. Children with a diagnosis of cerebral palsy or chronic neurological condition were more likely to have lower inter-rater agreement for both subjective and objective domains. On the HUI2, agreement was lower for parent-child pairs when the father was the respondent. For child-doctor pairs, an increased frequency of patient-doctor visits and doctors' seniority were predictors of poorer agreement on the HUI3 and HUI2 respectively. We identified factors associated with level of agreement for self- and proxy reporting on the HUI23. Parent-child agreement was higher than doctor-child agreement. Patients with significant pain or emotional distress and patients with a diagnosis of severe cerebral palsy or chronic neurological conditions were more susceptible to under-reporting of subjective aspects of well-being by doctors and parents and may benefit from formal assessment of health-related quality of life in the clinical setting.

Morrow AM ，Hayen A ，Quine S ，Scheinberg A ，Craig JC ... -  《-》

Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.

White-Koning M ，Arnaud C ，Dickinson HO ，Thyen U ，Beckung E ，Fauconnier J ，McManus V ，Michelsen SI ，Parkes J ，Parkinson K ，Schirripa G ，Colver A ... -  《-》

Health-related quality of life of children with epilepsy in Hong Kong: how does it compare with that of youth with epilepsy in Canada?

Yam WK ，Ronen GM ，Cherk SW ，Rosenbaum P ，Chan KY ，Streiner DL ，Cheng SW ，Fung CW ，Ho JC ，Kwong KL ，Ma LC ，Ma DK ，Tsui KW ，Wong V ，Wong TY ... -  《EPILEPSY & BEHAVIOR》

Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales.

Cremeens J ，Eiser C ，Blades M 《Health and Quality of Life Outcomes》

Parent proxy-reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress?

Parent-proxy reports of quality of life (QOL) are often used to guide decisions about children with cerebral palsy (CP), although little is known about the factors that influence parent-proxy reports. The aim of this study was to examine (i) the relationship between parental psychosocial distress and parent proxy-reported QOL; and (ii) whether parental psychosocial distress mediates the relationship between child impairment and proxy-reported QOL. A sample of 201 primary caregivers of children aged 4-12 years with CP completed the Cerebral Palsy Quality of Life Questionnaire for Children, a condition-specific QOL instrument, and a measure of psychosocial distress, the Kessler 10. The children, evenly distributed by gender (56% male) were sampled across Gross Motor Function Classification System levels (Level I = 18%, II = 28%, III = 14%, IV = 11%, V = 27%). Consistent with the hypotheses, parental distress was negatively correlated with all domains of parent proxy-reported QOL (r = -0.18 to r = -0.55). The relationship between impairment and proxy-reported QOL was mediated by parental distress for five of the seven domains of QOL (social well-being and acceptance, feelings about functioning, participation and physical health, emotional well-being and self-esteem, and pain and impact of disability). Child impairment did not predict access to services or family health. This is the first study that assesses the relationship between parental distress and proxy-reported QOL for children with CP. Although the cross-sectional nature of the available data precludes any statements of causality, the results suggest that, when using parent proxy, the parents' psychological state should also be measured. This is particularly important when, as is often the case for child disability research, proxy-reported QOL are the only available data.

Davis E ，Mackinnon A ，Waters E 《-》