Abstract

•Understand the high prevalence of distressing symptoms in children with cancer.•Describe the relationships between family caregiver-reported symptoms/quality of life and physician-reported disease status in this cohort of children with cancer. Symptom burden in pediatric cancer patients worsens with disease progression and cancer-related treatment. However, the specific relationship between disease status and symptom burden/quality of life (QoL) is poorly understood. To describe the prevalence of symptoms of children with cancer, and evaluate the relationship of symptoms and quality of life with physician-reported disease status. Family caregivers of newly diagnosed or newly relapsed children completed symptom (MSAS) and QoL (PedsQL) questionnaires prospectively during a 24-month period. Physicians completed questionnaires measuring disease status (SOIS) at each time point. Statistical analysis via a Generalized Linear Mixed Model compared symptoms, QoL, and disease status at each point. Family caregivers of 43 children with cancer (19 ≤ 12 years old, 24 > 12 years old) were enrolled. >95% of children exhibited at least one symptom. Lack of energy (91%) and sadness (88%) were most prevalent. Caregiver-reported PedsQL scores showed significant negative correlation with SOIS scores. MSAS scores were not correlated with SOIS scores. Symptom burden was high in this cohort of children with cancer. Our results showed that increased disease severity correlated with decreases in caregiver-reported QoL, but had no direct relationship with perceived symptom burden. This may suggest that disease severity is more directly associated with QoL than actual symptom burden, even in a population with a high prevalence of symptoms. Alternately, physician reports of disease severity may influence parental perception of their child’s health-related QoL.

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