Symptom profiles in children with advanced cancer: Patient, family caregiver, and oncologist ratings

BACKGROUND Systematic symptom assessment is not routinely performed in pediatric oncology. The objectives of the current study were to characterize the symptoms of pediatric oncology outpatients and evaluate agreement between patient and proxy reports and the association between children's ratings and oncologists' treatment recommendations. METHODS Two versions of the pediatric Memorial Symptom Assessment Scale (pMSAS) were translated into Spanish. An age‐appropriate and language‐appropriate pMSAS was administered independently before visits to the oncologist to patients and family caregivers (caregivers) and after visits to consenting oncologists. Statistical analysis included Spearman correlation coefficients and weighted kappa values. RESULTS English and Spanish results were similar and were combined. A total of 60 children and their caregivers completed the pMSAS. The children had a median age of 10 years (range, 7‐18 years); approximately 62% were male and 33% were Spanish‐speaking. Fourteen oncologists completed the pMSAS for 25 patients. Nine patients (15%) had no symptoms and 38 patients (63%) reported ≥2 symptoms. The most common symptoms were fatigue (12 patients; 40%) and itch (9 patients; 30%) for the younger children and pain (15 patients; 50%) and lack of energy (13 patients; 45%) among the older children. Total and subscale score agreement varied by proxy type and subscale, ranging from fair to good for most comparisons. Agreement for individual symptoms between the patient and proxy ranged from a kappa of −0.30 (95% confidence interval, −0.43 to −0.01) to 0.91 (95% confidence interval, 0.75 to 1.00). Three of 51 symptomatic patients (6%) had treatment recommendations documented in the electronic health record. CONCLUSIONS Symptoms are common and cross several functional domains. Proxy and child reports are often not congruent, possibly explaining apparent undertreatment among this group of patients. Cancer 2015;121:4080–4087. © 2015 American Cancer Society. To the authors' knowledge, the current study is among the first to systematically document symptom prevalence as reported by children, family caregivers, and oncologists in a pediatric outpatient oncology setting using a validated tool specifically designed for that purpose. Proxy and patient reports are often not congruent, emphasizing the importance of understanding the meaning behind symptom reports for the provision of optimal care.