Cicely Saunders Institute, King's College London, London, UK.
Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Patient. 2019 Feb;12(1):15-55. doi: 10.1007/s40271-018-0333-5.
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.
设计和提供优质儿科姑息治疗应优先考虑对儿童及其家庭至关重要的问题，以实现最佳结果。
本综述旨在确定患有绝症的儿童和年轻人（“年轻人”）及其家人关心的症状、问题和结果。系统综述的结果将为制定相关健康结果框架提供信息。
这是一项针对多个数据库的系统文献综述，以确定合格的主要证据。数据源包括 PsycINFO、MEDLINE、Embase、CINAHL、OpenGrey 和 Science Direct Journals，检索时间为 2016 年 8 月 1 日至 2017 年 7 月 30 日。该研究还包括与该领域专家的咨询、通过 Scopus 进行的引文搜索以及对纳入研究的参考文献列表的手动搜索。
在评估的 13567 篇文章中，有 81 篇被纳入。这些研究中大多数（n=68）来自高收入国家，重点关注患有癌症的年轻人（n=58）。共有 3236 名年轻人、2103 名家庭照顾者、108 个家庭和 901 名医疗保健提供者被纳入研究。在 30%的研究中，年轻人没有提供数据。以下领域和健康结果呈现出优先关注的主题：（1）身体（n=62 项研究），例如身体症状；（2）心理（n=65），例如担忧；（3）心理社会（n=31），例如人际关系；（4）存在主义（n=37），例如存在主义丧失；以及（5）“其他”（n=39），例如信息获取。
负担沉重的症状和问题影响患有恶性和非恶性疾病的年轻人，并且发生在疾病的整个过程中；儿科姑息治疗不应仅限于生命末期阶段。提出了一个以儿童-家庭为中心的健康结果框架，涵盖患者、家庭和服务质量水平，以提供服务发展信息。未来的研究应解决文献中确定的差距（即年轻人在研究中的参与、发展中国家的证据以及对非恶性疾病的关注）。
