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.
| Original language | English (US) |
|---|---|
| Article number | 689485 |
| Journal | Frontiers in Pediatrics |
| Volume | 9 |
| DOIs | |
| State | Published - Jul 2 2021 |
Bibliographical note
Funding Information:We acknowledge Daniel Notterman, MD (Princeton University); J. Michael Dean, MD (University of Utah); Joseph A. Carcillo, MD (UPMC Children's Hospital of Pittsburgh); Robert A. Berg, MD (Children's Hospital of Philadelphia); Athena Zuppa, MD (Children's Hospital of Philadelphia); Murray M. Pollack, MD (Children's National Hospital); Kathleen L. Meert, MD (Children's Hospital of Michigan); Mark W. Hall, MD (Nationwide Children's Hospital); Anil Sapru, MD (Mattel Children's Hospital, University of California Los Angeles); Patrick S. McQuillen, MD (Benioff Children's Hospital, University of California); Peter M. Mourani, MD (Children's Hospital Colorado, University of Colorado); David Wessel, MD (Children's National Hospital); Samuel Sorenson, BS (University of Utah); Lenora Olson, PhD (University of Utah) of the PICU-COS Investigators of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network and Tammara L. Jenkins, MSN, RN, PCNS-BC, FCCM (Program Officer, Pediatric Trauma and Critical Illness Branch) and Robert Tamburro, MD, MSc (Medical Officer, Pediatric Trauma and Critical Illness Branch) from the Eunice Kennedy Shriver National Institute of Child Health and Human Development. We additionally acknowledge the work of the PALISI POST-PICU Scoping Review Investigators (Supplementary Table 1). More information about the PICU COS and associated tools can be found at: https://www.cpccrn.org/network-projects/network-projects-picucoscoreoutcome-set/. Funding. Institutional support was provided from the University of Minnesota Clinical and Translational Science Institute (UL1TR002494 from the National Institutes of Health's National Center for Advancing Translational Sciences).
Funding Information:
Institutional support was provided from the University of Minnesota Clinical and Translational Science Institute (UL1TR002494 from the National Institutes of Health’s National Center for Advancing Translational Sciences).
Publisher Copyright:
© Copyright © 2021 Heneghan, Sobotka, Hallman, Pinto, Killien, Palumbo, Murphy Salem, Mann, Smith, Steuart, Akande and Graham.
Keywords
- children with medical complexity
- disabilities
- intensive care
- outcomes
- pediatrics