Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Abstract

Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent-provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.

Figure 1

Conceptual model of palliative care integration across the cancer continuum for patients who do not or who do survive. Adapted from Liben and colleagues.

Figure 2. Proposed novel domains and unanswered questions for the next generation of paediatric palliative care oncology investigation

PPC=paediatric palliative care.