Health-related quality of life outcome measures for children surviving critical care: a scoping review

for the POST-PICU and PICU-COS Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Networks

Research output: Contribution to journalReview articlepeer-review

11 Scopus citations


Purpose: 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. Methods: 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. Results: 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). Conclusion: 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.

Original languageEnglish (US)
Pages (from-to)3383-3394
Number of pages12
JournalQuality of Life Research
Issue number12
StatePublished - Dec 2021

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health


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