Quality of Life (QOL) in Pediatric Cancer Patients: Related Demographic, Psychosocial, and Treatment Variables and Concordance Between Child and Parent Proxy Reports

Abstract

Purpose: Survival rates of pediatric cancer have increased, so efficacy of treatment regimens has begun to focus on the psychosocial impact of cancer on a patient and his/her family, including child QOL. When a child is too young or too sick to report on his/her own QOL, parent proxy reports are utilized. The aims of the present study are to identify psychosocial, demographic, and treatment variables that affect a child’s QOL, quantify concordance between child and parent proxy reports, and determine whether strength of concordance is related to time since diagnosis, child gender, or child age. Methods: The “Psychosocial Assessment Tool” (PAT) (parents only) and QOL measures (parents and children) were completed within 2 weeks of diagnosis, and QOL measures (parents and children) again 6 months after diagnosis. We ran multivariate, linear regressions to investigate whether psychosocial variables measured by the PAT, child gender, child age, and intensity of the child’s treatment regimen could predict any of 8 different child QOL outcomes (4 child reports and 4 corresponding parent proxy reports). To measure concordance, we used single measure intraclass correlation coefficients to quantify agreement. We also examined concordance after splitting our sample size by time since diagnosis, child gender, and child age. Results: Higher scores on the PAT (indicating poorer psychosocial functioning) predicted three parent measures of child QOL but none of the child self reports. Males demonstrated an increased QOL relative to their female counterparts on 7/8 QOL measures. Child and parent proxy report of child QOL was moderate (or greater), similar across time points, gender, and age, with the exception of less than moderate concordance on the “psychosocial” QOL subscale for many subsets of parent-patient dyads. Almost universally, parent proxy reports underestimated a child’s self report of QOL. Discussion: These results suggest that psychosocial risk, as quantified by the PAT (a parent reported measure) might color a parent’s perception of their child’s QOL. Generally, moderate concordance existed in our patient population, but clinicians should be wary of the lower concordance rates on psychosocial domains of QOL. Lastly, it is important for clinicians to be conscious of the fact that parents tend to underestimate child QOL in comparison to the child’s self report. These conclusions will help clinicians tailor appropriate and effective interventions to improve QOL in their pediatric cancer patients.