Quality of Life in Children with Advanced Cancer: A Report from the PediQUEST Study.

TitleQuality of Life in Children with Advanced Cancer: A Report from the PediQUEST Study.
Publication TypeJournal Article
Year of Publication2016
AuthorsRosenberg AR, Orellana L, Ullrich C, Kang T, J Geyer R, Feudtner C, Dussel V, Wolfe J
JournalJ Pain Symptom Manage
Date Published2016 May 21

CONTEXT: 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.

OBJECTIVES: We aimed to describe patient-reported HRQOL and its relationship to symptom distress.

METHODS: Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology (PediQUEST) study included primarily patient-reported symptom-distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life [PedsQL] 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.

RESULTS: 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 PedsQL score was 74 (IQR 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.

CONCLUSION: Symptom-distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.

Alternate JournalJ Pain Symptom Manage
PubMed ID27220948
Grant ListK07 CA096746 / CA / NCI NIH HHS / United States
L40 CA170049 / CA / NCI NIH HHS / United States