Differences in Symptom Reporting by Children With Cancer, Caregivers, and Care Teams

Research indicates substantial disagreement between symptom reports from children, caregivers, and care teams, though triadic agreement is rarely assessed.

To assess agreement for 31 cancer-related symptoms between child-caregiver-care team triads.

Children (n = 55) were within 1 year of cancer treatment (M = 68.44 days since treatment, SD = 159.09) and aged 6-17 years (M = 12.02, SD=3.50). Caregivers (n = 55) were mostly female (65.5%). Thirty-one symptoms were collected via child and caregiver reports on the Memorial Symptom Assessment Scale and extracted from the medical record for care team documentation. McNemar tests evaluated symptom report differences. Weighted kappa statistics assessed agreement.

Caregivers and care teams consistently under-reported child symptoms. Caregivers significantly under-reported 3 child symptoms. Care teams significantly under-reported 13 symptoms and 11 symptoms were not endorsed by care team. Child-caregiver agreement ranged from κ = -0.059 (swelling of arms/legs) to κ = 0.751 (nausea); 61% of symptoms were none to fair agreement. Child-care team agreement ranged from κ = -0.033 (swelling of arms/legs) to κ = 0.466 (nausea); 96.7% of symptoms were none to fair agreement. Caregiver-care team agreement ranged from κ = -0.029 (swelling of arms/legs) to κ = 0.565 (vomiting); 87% of symptoms were none to fair agreement.

We found substantial triadic disagreement between child, caregiver, and care team symptom reports; the greatest disagreement existed between child-care team reports. Children consistently reported more symptoms than caregivers and their care team, suggesting the child's voice may not be solicited or documented. Further research is needed to understand how best to identify and solicit child reports of symptoms to optimize treatment.