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Gepubliceerd in: Quality of Life Research 12/2021

29-06-2021 | Review

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

Auteurs: Elizabeth Y. Killien, Laura L. Loftis, Jonna D. Clark, Jennifer A. Muszynski, Brian J. Rissmiller, Marcy N. Singleton, Benjamin R. White, Jerry J. Zimmerman, Aline B. Maddux, Neethi P. Pinto, Ericka L. Fink, R. Scott Watson, McKenna Smith, Melissa Ringwood, Robert J. Graham, 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

Gepubliceerd in: Quality of Life Research | Uitgave 12/2021

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Abstract

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.

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Metagegevens
Titel
Health-related quality of life outcome measures for children surviving critical care: a scoping review
Auteurs
Elizabeth Y. Killien
Laura L. Loftis
Jonna D. Clark
Jennifer A. Muszynski
Brian J. Rissmiller
Marcy N. Singleton
Benjamin R. White
Jerry J. Zimmerman
Aline B. Maddux
Neethi P. Pinto
Ericka L. Fink
R. Scott Watson
McKenna Smith
Melissa Ringwood
Robert J. Graham
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
Publicatiedatum
29-06-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 12/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02928-9