Pain Experience in Children With Advanced Cancer

Background: It is important for health care professionals to understand the pain experience in children with advanced cancer. There has been increased attention to this topic, but systematic studies are limited. Objective: To examine pain symptoms and management in children with advanced cancer using child self-report and nurse documentation. Methods: A prospective, longitudinal method was used to collect data from 62 children over a 5-month period. Children were English and Spanish speaking, ages 6 to 17 years, with advanced cancer. Nurses also provided data. Results: Across all interviews, pain was reported 56% of the time by all children. Nurses documented pain only 23% of the time. Children most frequently reported head pain (31%), followed by abdomen, lower back, leg, and feet pain (20% to 30%). Children consistently reported more intense pain compared with nurses. Nonopioids were used more frequently (45%) than opioids (32%), and nurses’ perception of pain intensity was more highly correlated with administration of opioids (r = .72, P < .001). Children who died during their participation in this study received more opioids over time. Pain intensity was relatively stable over time. Nurses noted ethnicity related differences with higher pain levels for Caucasian children, who received analgesics more frequently. Discussion: The children consistently reported pain. Child self-report and nurse documentation of pain differed, as did pain management among children who died compared with those who did not. Ethnicity differences in the identification and management of pain by nurses begs further study. Overall, nurses were aware of and responsive to pain and pain management.