Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle Children's Hospital, FA 2.112, 4800 Sand Point Way NE, Seattle, WA, 98105, USA.
Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, TX, USA.
Qual Life Res. 2021 Dec;30(12):3383-3394. doi: 10.1007/s11136-021-02928-9. Epub 2021 Jun 29.
Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research.
We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970-2017. We used dual review for article selection and data extraction.
Of 60,349 citations, 66 articles met inclusion criteria. The majority of studies were observational (89.4%) and assessed HRQL at one post-discharge time-point (86.4%), and only 10.6% of studies included a baseline assessment. Time to the first follow-up assessment ranged from 1 month to 10 years post-hospitalization (median 3 years, IQR 0.5-6). For 26 prospective studies, the median follow-up time was 0.5 years [IQR 0.25-1]. Parent/guardian proxy-reporting was used in 83.3% of studies. Fifteen HRQL instruments were employed, with four used in >5% of articles: the Health Utility Index (n = 22 articles), the Pediatric Quality of Life Inventory (n = 17), the Child Health Questionnaire (n = 16), and the 36-Item Short Form Survey (n = 9).
HRQL assessment in pediatric critical care research has been centered around four instruments, though existing literature is limited by minimal longitudinal follow-up and infrequent assessment of baseline HRQL.
健康相关生活质量（HRQL）已被确定为评估儿科重症监护后最重要的核心结果之一，但目前尚无儿科重症监护研究中使用 HRQL 的数据。我们旨在确定用于评估重症监护后存活儿童的 HRQL 工具，并描述研究方法、患者人群和工具特征，以确定不足之处并指导进行 HRQL 研究的研究人员。
我们在 PubMed、EMBASE、PsycINFO、护理与联合健康文献累积索引和 Cochrane 注册中心中查询了 1970-2017 年发表的评估儿科重症监护后存活者的研究。我们使用双重审查进行文章选择和数据提取。
在 60349 条引文中有 66 篇文章符合纳入标准。大多数研究为观察性研究（89.4%），且在出院后一个时间点评估 HRQL（86.4%），只有 10.6%的研究包括基线评估。首次随访评估的时间从住院后 1 个月到 10 年不等（中位数 3 年，IQR 0.5-6）。对于 26 项前瞻性研究，中位随访时间为 0.5 年 [IQR 0.25-1]。在 83.3%的研究中使用了父母/监护人的代理报告。使用了 15 种 HRQL 工具，其中 4 种在超过 5%的文章中使用：健康效用指数（n=22 篇）、儿科生活质量量表（n=17 篇）、儿童健康问卷（n=16 篇）和 36 项简短健康调查（n=9 篇）。
儿科重症监护研究中的 HRQL 评估主要集中在四种工具上，但现有文献存在纵向随访时间有限和基线 HRQL 评估不频繁的局限性。
