title: Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study.
abstract: Modifiable 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.
  
  
  
  We aimed to describe patient-reported HRQOL and its relationship to symptom distress.
  
  
  
  Prospective, 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.
  
  
  
  Of 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.
  
  
  
  Symptom distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.
authors.affiliation: 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.
authors.forename: Abby R
authors.initials: AR
authors.lastname: Rosenberg
authors.affiliation: Biostatistics Unit, Faculty of Health, Deakin University, Geelong, Victoria, Australia.
authors.forename: Liliana
authors.initials: L
authors.lastname: Orellana
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Boston, Massachusetts, USA; Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Ullrich
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Tammy
authors.initials: T
authors.lastname: Kang
authors.affiliation: 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.
authors.forename: J Russell
authors.initials: JR
authors.lastname: Geyer
authors.affiliation: Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
authors.affiliation: Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA; Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
authors.forename: Veronica
authors.initials: V
authors.lastname: Dussel
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Boston, Massachusetts, USA; Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA. Electronic address: joanne_wolfe@dfci.harvard.edu.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D016014:Linear Models; D008137:Longitudinal Studies; D008297:Male; D015999:Multivariate Analysis; D009369:Neoplasms / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D010166:Palliative Care; D000071066:Patient Reported Outcome Measures; D011446:Prospective Studies; D011788:Quality of Life; D013315:Stress, Psychological / Q000209:etiology; D013727:Terminal Care
keywords: Quality of life; end of life; palliative care; patient-reported outcomes; pediatric cancer; symptom distress