Division of Psychiatry II, Department of Psychiatry, Psychotherapy, Psychosomatics, and Medical Psychology, Medical University Innsbruck, Innsbruck, Austria.
Institute of Psychology, University of Innsbruck, Innsbruck, Austria.
Qual Life Res. 2023 Apr;32(4):965-976. doi: 10.1007/s11136-022-03259-z. Epub 2022 Sep 24.
BACKGROUND: Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer. METHODS: Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8-14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above. RESULTS: Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for 'treatment burden', 'treatment involvement', and 'financial issues'. Physical and psychological aspects were more frequently covered than social issues. DISCUSSION: This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.
背景：健康相关生活质量（HRQOL）是儿科肿瘤学中的一个关键概念。本系统评价旨在更新 Anthony 等人提出的概念性 HRQOL 模型（Qual Life Res 23(3):771-789, 2014），涵盖身体、情感、社会和一般 HRQOL 方面，并全面介绍癌症儿童的年龄和疾病特异性 HRQOL 问题。
方法：检索 Medline、PsychINFO、Cochrane 系统评价数据库（CDSR）和 COSMIN 数据库（截至 2020 年 12 月 31 日），以获取使用患者报告的结局测量（PROMs）和癌症儿童及其父母的定性研究的出版物。提取项目和引文，并将其映射到上述癌症儿童 HRQOL 的概念模型上。
结果：在 2038 项确定的研究中，有 221 项被纳入数据提取。我们确定了 96 项具有 2641 个项目的 PROM，并从 45 项定性研究中提取了 798 条引文。大多数项目和引文（94.8%）可以映射到概念模型上。然而，进行了一些调整，并补充了“治疗负担”、“治疗参与”和“财务问题”等（子）领域。身体和心理方面比社会问题更常被涵盖。
讨论：本综述提供了癌症儿童 HRQOL 问题的全面概述。我们的发现主要支持 Anthony 等人提出的 HRQOL 模型（Qual Life Res 23(3):771-789, 2014），但也提出了一些调整。本综述可以被认为是我们对癌症儿童 HRQOL 理解的一个改进的起点。进一步的定性研究将有助于评估 HRQOL 模型的全面性及其所涵盖问题的相关性。
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