Elizabeth Y Killien1, Laura L Loftis2, Jonna D Clark3, Jennifer A Muszynski4, Brian J Rissmiller2, Marcy N Singleton5, Benjamin R White6, Jerry J Zimmerman3, Aline B Maddux7, Neethi P Pinto8, Ericka L Fink9, R Scott Watson3, McKenna Smith10, Melissa Ringwood10, Robert J Graham11. 1. 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. elizabeth.killien@seattlechildrens.org. 2. Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, TX, USA. 3. 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. 4. Pediatric Critical Care Medicine, Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH, USA. 5. Pediatric Critical Care, Children's Hospital At Dartmouth, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA. 6. Pediatric Critical Care Medicine, Penn State University College of Medicine, Hershey, PA, USA. 7. Critical Care Medicine, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA. 8. Critical Care Medicine, Department of Anesthesiology and Critical Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA. 9. Department of Critical Care Medicine, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh, Pittsburgh, PA, USA. 10. Critical Care Medicine, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA. 11. Division of Critical Care Medicine, Department of Anesthesia, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, MA, USA.
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.
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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