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1 Projecting outcomes in respiratory technology-dependent children after serious illness (Project ORCAS)

Published online by Cambridge University Press:  11 April 2025

Julia Heneghan
Affiliation:
University of Minnesota
Elizabeth Marsh
Affiliation:
Family Voices of Minnesota
Sisi Ma
Affiliation:
University of Minnesota, Institute for Health Informatics
Samuel Goldfarb
Affiliation:
University of Minnesota, Department of Pediatrics
Scott Crow
Affiliation:
University of Minnesota Department of Psychiatry
Marie Steiner
Affiliation:
University of Minnesota, Department of Pediatrics
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Abstract

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Objectives/Goals: Children with chronic respiratory technology needs (CRTN) are becoming a dominant patient group in pediatric intensive care units (ICUs). However, little is known about patient-level, long-term outcomes in this population. The lack of such knowledge may lead to inadequate ICU therapies, interventions, or follow-up care. Methods/Study Population: This project will deploy a set of ecological momentary assessment (EMA) modules measuring real-time functioning as well as standardized instruments to measure child and family outcomes including health care utilization, physical functioning, and health-related quality of life following pediatric critical illness in children with CRTN. EMA has particular strength in assessing conditions where individual-level characteristics vary over time, as after critical illness. EMA’s recurrent measurements allow for evaluation of the variables’ temporal course and limit the potential for bias associated with recall surveys. Pulmonary function in children with CRTN in this study will be monitored over time using standardized pulmonary metrics and information from home respiratory machines. Results/Anticipated Results: This work tests the central hypothesis that long-term functional outcomes in children with CRTN are predicted by multimodal data obtained during and shortly after critical illness. To date, 17 families (of a planned 70) have been enrolled. Adherence to EMA modules is high, with 80% completion. Following serial data collection at 3, 6, and 9 months after hospital discharge, phenotypes of recovery (including improvement, stability, or deterioration) will be described. This will include 1) describing the patient demographic and clinical features associated with each long-term outcome trajectory and 2) identifying subgroups with similar outcome trajectories using patient demographics, features of the clinical illness, and EMA data using both traditional biostatistical and causal analysis techniques. Discussion/Significance of Impact: This project will provide important insights into the long-term outcomes following critical illness of children with CRTN while utilizing an innovative methodology. This proposal will provide the necessary information to drive future clinical trials assessing potential interventions at a number of different points to improve outcomes.

Type
Posters 1–49 are the top 50 posters Biostatistics, Epidemiology, and Research Design
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
© The Author(s), 2025. The Association for Clinical and Translational Science

Footnotes

*Blue Ribbon Awardee; † Gold Ribbon Awardee