Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Abstract

Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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