• Abby R Rosenberg, Liliana Orellana, Christina Ullrich, Tammy Kang, J Russell Geyer, Chris Feudtner, Veronica Dussel, and Joanne Wolfe.
• Seattle Children's Hospital Cancer and Blood Disorders Center, Seattle, Washington, USA; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA; Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
• J Pain Symptom Manage. 2016 Aug 1; 52 (2): 243253243-53.

ContextModifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom distress may be an important factor for intervention.ObjectivesWe aimed to describe patient-reported HRQOL and its relationship to symptom distress.MethodsProspective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology study included primarily patient-reported symptom distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression.ResultsOf 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total Pediatric Quality of Life score was 74 (interquartile range 63-87) and was "poor/fair" (e.g., <70) 38% of the time. "Poor/fair" categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL.ConclusionSymptom distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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