Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study

Abstract

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.

The relationship between household income and patient‐reported symptom distress and quality of life in children with advanced cancer: A report from the PediQUEST study

“…The Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study was developed to collect patient‐reported outcomes (PROs) in children with advanced cancer to better elicit the child’s voice around symptom experiences. Prior PediQUEST publications demonstrated that children with advanced cancer experience high symptom distress, and that symptom distress is strongly associated with health‐related QOL (HRQOL) . These data suggest that more intensive symptom management may improve a child’s HRQOL, and that identifying children at highest risk of symptom distress might facilitate interventions .…”

“…Prior PediQUEST publications demonstrated that children with advanced cancer experience high symptom distress, and that symptom distress is strongly associated with health‐related QOL (HRQOL) . These data suggest that more intensive symptom management may improve a child’s HRQOL, and that identifying children at highest risk of symptom distress might facilitate interventions . To our knowledge, the impact of socioeconomic status on a child’s symptom distress and HRQOL has not been previously explored.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…Patients reported a median of three concurrent distressing symptoms per survey; 73%, 35%, and 12% of patients reported at least two, five, and nine concurrent symptoms, respectively. 60 13 symptoms were independently associated with reductions in patient-reported health-related quality of life, which was further reduced when concurrent symptoms existed.…”

“…54–58 In order to understand symptom burdens and health-related quality of life from the perspectives of children with advanced cancer (defined as progressive, recurrent, or non-responsive disease), investigators in the Paediatric Quality of Life and Symptoms Technology (PediQUEST) study 59,60 prospectively surveyed 104 children from three large children’s hospitals as often as once per week. Over a 9 month period, 920 surveys were collected, including 73 surveys of 25 children during their last 3 months of life.…”

Predictors of quality of life for families of children and adolescents with severe physical illnesses who are receiving hospital‐based care

“…The onset of a severe physical illness such as cancer, kidney, liver or gastrointestinal disease and the subsequent periods of hospitalisation are recognised as stressful life events for families and children . Dealing with such a severe illnesses on a daily basis has also led to increasing interest among paediatric healthcare professionals, to evaluate and foster the well‐being and quality of life among the children and their families.…”