Symptoms and management of children with incurable cancer in mainland China

Abstract Purpose This study was designed to report information regarding symptomology of incurable pediatric cancer to promote proactive medicine and support for children and their families in the palliative phase in Mainland China. Method A multi-center retrospective cohort study including 205 children who died from incurable cancer between June 2008 and September 2013 were analyzed. Results An incurable diagnosis was confirmed between 0 and 1726 (median, 279) days from initial diagnosis with death occurring between 1 and 239(median, 83) days. The most frequent symptoms were fatigue (93.7%), pain (87.3%), and poor appetite (76.1%). The earliest symptoms were pain and fatigue. Children with leukemia and lymphoma also complained early of nausea/vomiting, and children with solid tumors complained early of disturbed sleep. Later in the palliative phase, altered consciousness and seizures were found in children with central nervous system tumors and solid tumors, while children with leukemia and lymphoma were found to have fever, diarrhea, and bleeding. However, these symptoms only persisted for a short time. DNR discussions were held in 89 cases (43.4%) at a median of 37 (range, 4–178) days before death. A total of 154 patients (75.1%) died at home and 51 patients (24.9%) in the hospital. Conclusions This study provides new knowledge about symptomology to health care professionals and parents of children in Mainland China. Given our results, an improved alternative care plan should be developed and implemented earlier to facilitate end-of-life planning.