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Parents Reliable Sources of Their Child's Patient Experience

Armen Hareyan's picture


Researchers and physicians can confidently assess quality of life factors in pediatric patients from either the child or parents, according to a new study. Published in the May 15, 2006 issue of CANCER, a peer-reviewed journal of the American Cancer Society, the study reveals that parents of pediatric patients consistently reported similar assessments of health related quality of life (HRQL) as the child. Furthermore, the study reports that parents may serve as reliable surrogates if a child is unable to complete HRQL assessments.

Quality of life assessments have become increasingly important in measuring treatment effectiveness. For example, if two drugs are equal in their ability to cure a disease but unequal in their impact on patients' quality of life, the one that positively impacts HRQL will likely be favored. As cancer treatments become more efficacious, particularly for childhood cancers, their impact beyond the tumor is becoming increasingly important to families and physicians choosing treatments.

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While doctors and researchers can rely on adult patients' responses to HRQL questionnaires, those working with children often rely on multiple sources for these measures, including the child, parents, teachers, physicians, and nurses. Previous evidence, though limited, suggested that parents may not be reliable reporters of their child's HRQL. For example, studies have shown parents of seriously ill children tend to underestimate the HRQL of their child.

However, the evidence is limited by inadequate study designs. Researchers led by senior author Sean Phipps, Ph.D., and first author Kathryn M. W. Russell, M.S. of St. Jude Children's Research Hospital in Memphis conducted a broad inclusive study of 199 children either during or after cancer treatment and 108 healthy children to compare the agreement of HRQL measures between child and parents.

Analysis of parent-child HRQL assessments showed that in each of the ten HRQL measures, parents and child provided significantly similar answers. The correlation between parents and child was most consistent in families with cancer. However, parents reported lower physical function and greater physical challenges than their child. In addition, parents of a healthy child significantly overestimated most HRQL measures.

"Although it would be preferable to obtain data from both informants," conclude the authors, "data can be obtained with reasonable confidence from either parent or child if only one informant is available."