Quality of palliative care for children with cancer

Abstract

Objectives: Principles of pediatric palliative care (PPC) can and should be incorporated from the time of diagnosis of childhood cancer, concurrent with curative treatments, rather than only being provided as an alternative to those treatments at the end of life. As part of a larger project to enhance PPC provision we assessed the quality of palliative care provided to children with cancer and their families. Methods: Data were collected at 15 of the 16 pediatric oncology programs in Canada from four sources: 1) children age 7 to 19 with active disease or receiving cancer treatments completed the Memorial Symptom Assessment Scale and the Pediatric Quality of Life Inventory; 2) parents of children age 0 to 19 with active disease or receiving cancer treatments completed a survey about symptoms, quality of life, and care quality; 3) review of health records of deceased patients; and 4) surveys with bereaved parents about the quality of their children’s end-of-life care. Results: Adolescents (n=38) reported more symptoms (8 vs. 5) but similar mean quality of life scores (65/100 vs. 67/100) compared with younger children (n= 26). Both groups report being asked frequently about symptoms by health professionals, but 40% reported they are never or almost never asked about quality of life. The lowest quality score from all parent participants (n=222) was around support of siblings (mean score 2.6/4). Only 43% of bereaved parents were able to look back on their child’s care during the last month of life without regrets. Regrets were mostly around not being able to spend more time at home. Conclusions: There is room for improvement in PPC for children with cancer. Children might benefit from more attention to their quality of life beyond symptom management. Regrets are common among bereaved parents, but may be reduced by finding ways to help families spend more time at home.