Approaching the third decade of paediatric palliative oncology investigation: historical progress and future
Abby R Rosenberg1, Joanne Wolfe1
1Seattle Children's Hospital Cancer and Blood Disorders Center, Seattle, WA, USA (A R Rosenberg MD); Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA (A R Rosenberg); Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA, USA (A R Rosenberg); Department of Psychosocial Oncology and Palliative Care, and Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, MA, USA (J Wolfe MD); Department of Medicine, Boston Children's Hospital, Boston, MA, USA (J Wolfe); and Harvard Medical School, Boston, MA, USA (J Wolfe).
Insights
Paediatric palliative care (PPC) research has advanced significantly over two decades. Studies now focus on the entire cancer journey, improving quality of life for children and their families.
Area of Science:
- Pediatric Oncology
- Palliative Care Research
Background:
- The World Health Organization (WHO) defined Paediatric Palliative Care (PPC) two decades ago, advocating for its integration into pediatric oncology.
- Initial research focused on end-of-life care, identifying symptom burden and barriers to communication.
Purpose of the Study:
- To review the evolution and key findings of PPC research over the past 20 years.
- To highlight the expansion of research scope and the identification of new support needs.
Main Methods:
- Literature review and synthesis of research findings over two decades.
- Analysis of the progression of research focus from end-of-life to the entire cancer continuum.
Main Results:
- Early research highlighted symptom burden and communication challenges in end-of-life care.
- Later research expanded to include the full cancer continuum, patient voices, and support for siblings and minority groups.
- Randomized clinical trials have tested interventions to improve outcomes.
Conclusions:
- PPC research has evolved substantially, providing critical insights into improving care for children with serious illnesses.
- Future research should continue to address the burdens associated with pediatric cancer and enhance supportive care strategies.
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.
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