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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.
Insights
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.
Abstract:
Children with disabilities compose a substantial portion of admissions and bed-days in the pediatric intensive care unit (PICU) and often experience readmissions over time. Impacts of a PICU admission on post-discharge health status may be difficult to distinguish from pre-existing disability in this population. Efforts to standardize outcome measures used for children with disabilities may help identify morbidities associated with PICU hospitalizations. Although a scoping review of outcome measures to assess children after episodes of critical illness has recently been published, it is not known to what extent these measures are appropriate for use in children with disabilities. This limits our ability to effectively measure long-term outcomes following critical illness in this important patient population. Through mixed methodology of scoping review and multi-stakeholder consensus, we aimed to identify and describe instruments previously utilized for this purpose and to explore additional tools for consideration. This yielded 51 measures across a variety of domains that have been utilized in the PICU setting and may be appropriate for use in children with disabilities. We describe characteristics of these instruments, including the type of developmental domains assessed, availability of population data, validation and considerations regarding administration in children with disabilities, and ease of availability of the instrument to researchers. Additionally, we suggest needed alterations or accommodations for these instruments to augment their utility in these populations, and highlight areas for future instrument development.
