Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Johanna Taylor1,2, Alison Booth1,2, Bryony Beresford2,3

  • 1Department of Health Sciences, University of York, York, UK.

Insights

Specialist pediatric palliative care for children with cancer is linked to different end-of-life care, but its impact on quality of life remains unclear. Access barriers exist, and further research is needed.

Area of Science:

  • Pediatric Oncology
  • Palliative Care Research
  • Health Services Research

Background:

  • Specialist pediatric palliative care (SPPC) is promoted for children with cancer.
  • Uncertainty exists regarding the specific role and impact of SPPC for this population.

Purpose of the Study:

  • To evaluate the impact of SPPC on children and young people with cancer.
  • To identify factors influencing access to SPPC for pediatric cancer patients.

Main Methods:

  • A mixed-methods systematic review and narrative synthesis.
  • Searches of multiple databases (2000-2019) identified 42 primary studies of any design.
  • Study quality was assessed using The Mixed Methods Appraisal Tool.

Main Results:

  • SPPC is associated with less intensive end-of-life care, more advance care planning, and fewer in-hospital deaths.
  • Evidence is insufficient to determine if SPPC improves symptom burden or quality of life.
  • Barriers to access include uncertainty about services, concerns about new teams, and timing of introduction; children with hematological malignancies access SPPC less.

Conclusions:

  • Children with cancer receiving SPPC experience different care patterns.
  • Further research is needed to understand patient perspectives and confirm if SPPC improves quality of life.
Abstract

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