Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Jun;34(6):731-775.
doi: 10.1177/0269216320908490. Epub 2020 May 2.

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

Johanna Taylor  1   2 , Alison Booth  1   2 , Bryony Beresford  2   3 , Bob Phillips  2   4 , Kath Wright  4 , Lorna Fraser  1   2
Affiliations

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

Johanna Taylor et al. Palliat Med. 2020 Jun.

Abstract

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.

Keywords: Palliative care; adolescent; child; hospice care; neoplasms; systematic review; terminal care.

PubMed Disclaimer

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Study flow diagram.
Figure 2.
Figure 2.
Data collection period for studies examining outcomes or characteristics of children receiving specialist paediatric palliative care.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Sullivan R, Kowalczyk JR, Agarwal B, et al. New policies to address the global burden of childhood cancers. Lancet Oncol 2013; 14(3): e125–e135. - PubMed
    1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2018. CA Cancer J Clin 2018; 68(1): 7–30. - PubMed
    1. Hassan H, Rompola M, Glaser AW, et al. Validation of a classification system for treatment-related mortality in children with cancer. BMJ Paediatr Open 2017; 1(1): e000082. - PMC - PubMed
    1. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342(5): 326–333. - PubMed
    1. Wolfe J, Orellana L, Ullrich C, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 2015; 33(17): 1928–1935. - PMC - PubMed

Publication types