Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health

The relationship between child- and parent-reported quality of life (QOL) a nd the effects of parental mental health, illness stressors, and child vuln erability was explored using two measures of QOL: the Pediatric Cancer Qual ity Life-32 (Varni et al., 1998a) and the Disquol (Eiser, Cotter, Oades, Se amark, & Smith, 1999). Thirty-two children with acute lymphoblastic leukaem ia (mean age = 8.92 years) and 36 parents completed measures of QOL when at tending routine clinic. In addition. parents also completed the General Hea lth Questionnaire (GHQ-28), perception of the child's vulnerability, and il lness-related stressors. Significant correlations were found between the ov erall scores on the two child-completed QOL measures. with a range of poor, moderate to good correlations found between the individual subscales. Poor to moderate concordance was found between child and parent reports. Childr en who self-reported poorer QOL had mothers who were more depressed. Parent s who reported poorer QOL for their child reported more illness stressors a nd perceived their child as being more vulnerable. Assumptions that concord ance between child and parent ratings of QOL is a necessary requirement for new measures of QOL are challenged.