Health Related Quality of Life

Beyond survival and long-term late effects,health-re-lated quality of life (HRQOL) is increasingly being appreciated as an important outcome measure for evaluating treatment effects in clinical research (Spilker 1996; Staquet 1998;Drotar 1998; Joyce 1999). Health-related quality of life is a subjective term, but it reflects the understanding that health is not only the absence of disease,but also a complex function of psychological, social, physical, and functional well-being. The very few HRQOL studies conducted on childhood cancer survivors to date have usually been limited to proxy reports from clinicians or parents, without considering the child's own perspective on his or her functioning and well-being. Practically no published HRQOL-related studies are specific to neu-roblastoma survivors. One exception was a study of health status conducted by Barr and colleagues (2000) using health utility indexes. They sent questionnaires to parents of children who survived either Wilms' tumor (n=52) or advanced neuroblastoma (n=26), and compared scores related to health attributes and functional capacity. Children surviving high-risk neuroblastoma had a greater overall burden of morbidity, and a significantly higher likelihood of sensory deficits, specifically in speech and hearing, than did children surviving Wilms' tumor. In one measure representing constructs for memory and problem-solving skills,both groups showed indications of cognitive morbidity (Barr 2000). Psychological adjustment and psychosocial functioning among long-term neuroblastoma survivors has yet to be addressed in the clinical literature, although a cross-sectional study on HRQOL and family impact from the cancer experience is currently being conducted through the Children's Oncology Group. This study compares outcomes across neuroblastoma treatment regimens. Results from that study should be available soon.

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