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Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review
Julia A Heneghan1, Sarah A Sobotka2, Madhura Hallman3
1Division of Pediatric Critical Care Medicine, University of Minnesota Masonic Children's Hospital, Minneapolis, MN, United States.
Frontiers in Pediatrics
|July 19, 2021
Summary
Identifying appropriate outcome measures for children with disabilities after pediatric intensive care unit (PICU) admission is crucial. This study identified 51 potential measures to assess long-term health status in this vulnerable population.
Area of Science:
- Pediatric critical care medicine
- Disability studies
- Health outcomes research
Background:
- Children with disabilities represent a significant patient group in pediatric intensive care units (PICUs).
- Assessing post-discharge health status in these children is challenging due to pre-existing conditions.
- Standardized outcome measures are needed to identify morbidities linked to PICU admissions.
Purpose of the Study:
- To identify and describe existing outcome measures used in the PICU setting for children with disabilities.
- To explore additional tools suitable for assessing long-term outcomes in this population.
- To suggest modifications and future development needs for outcome measures.
Main Methods:
- Mixed-methods approach combining a scoping review with multi-stakeholder consensus.
- Systematic identification and characterization of instruments used for outcome assessment.
- Exploration of measure appropriateness, validation, and administration considerations for children with disabilities.
Main Results:
- Identified 51 outcome measures utilized in the PICU setting with potential applicability to children with disabilities.
- Described characteristics of these measures, including assessed domains, data availability, and validation.
- Highlighted necessary alterations for instruments and areas for future development.
Conclusions:
- Existing outcome measures may be adapted for use in children with disabilities following PICU admission.
- Further research is needed to refine and develop specialized instruments for this population.
- Improved outcome measurement will enhance understanding of critical illness impacts on children with disabilities.
