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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.
Background:
Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer.
Aim:
To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access.
Design:
A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874).
Data Sources:
Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool.
Results:
An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services.
Conclusion:
Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life.
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