Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review.

Julia A Heneghan,Robert J Graham,Kilby Mann,Neethi Pinto,Manzilat Akande,Elizabeth Y Killien,Sinead Murphy Salem,Kathryn Palumbo,Barbara Smith,Rebecca Steuart,Madhura Hallman,Sarah A Sobotka

doi:10.3389/fped.2021.689485

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.

Highlights

Episodes of pediatric critical illness may result in mortality or morbidity across a range of domains in a child’s functioning
post-intensive care syndrome-pediatrics (PICS-p) domains of focus did not vary significantly between those instruments identified in the scoping review and those identified by expert opinion
Children with pre-existing disabilities represent a significant portion of admissions to the intensive care unit

Summary

Introduction

Episodes of pediatric critical illness may result in mortality or morbidity across a range of domains in a child’s functioning. Recent work has resulted in a scoping review as well as a core set of outcome measures used to assess children after episodes of critical illness with a focus on these PICS-p domains [10, 11]. It is not known whether these measures are appropriate for use in children with pre-existing disabilities or complex medical needs, who make up a substantial portion of admissions to the modern PICU [5, 8, 9]. We aimed to identify and describe characteristics of instruments that may be useful to all stakeholders, including but not limited to families, intensivists, and continuity providers (e.g., medical, educational, and therapybased professionals) in the longitudinal evaluation of children with disabilities following critical illness

Objectives

Methods

Results

Conclusion