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Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes

Namisango, Eve; Bristowe, Katherine; Allsop, Matthew J.; Murtagh, Fliss E.M.; Abas, Melanie; Higginson, Irene J.; Downing, Julia; Harding, Richard


Eve Namisango

Katherine Bristowe

Matthew J. Allsop

Melanie Abas

Irene J. Higginson

Julia Downing

Richard Harding



The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.

This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.

This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.

Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.

Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.


Namisango, E., Bristowe, K., Allsop, M. J., Murtagh, F. E., Abas, M., Higginson, I. J., Downing, J., & Harding, R. (2019). Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. Patient, 12(1), 15-55.

Journal Article Type Article
Acceptance Date Sep 10, 2018
Online Publication Date Oct 26, 2018
Publication Date 2019-02
Deposit Date Nov 27, 2018
Publicly Available Date Oct 27, 2019
Journal The Patient - Patient-Centered Outcomes Research
Print ISSN 1178-1653
Electronic ISSN 1178-1661
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 12
Issue 1
Pages 15-55
Keywords Nursing (miscellaneous)
Public URL
Publisher URL
Contract Date Nov 27, 2018