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

Autor:	Heneghan JA; Division of Pediatric Critical Care Medicine, University of Minnesota Masonic Children's Hospital, Minneapolis, MN, United States., Sobotka SA; Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, The University of Chicago, Chicago, IL, United States., Hallman M; Division of Pediatric Critical Care Medicine, University of Alabama at Birmingham, Birmingham, AL, United States., Pinto N; Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, United States., Killien EY; Division of Pediatric Critical Care Medicine, Department of Pediatrics, Seattle Children's Hospital, University of Washington School of Medicine, Seattle, WA, United States., Palumbo K; Department of Pediatrics, University of Rochester Medical Center, Rochester, NY, United States., Murphy Salem S; Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children's Hospital, Boston, MA, United States., Mann K; Department of Physical Medicine and Rehabilitation, Children's Hospital Colorado, University of Colorado, Aurora, CO, United States., Smith B; Departments of Physical Therapy and Pediatrics, University of Florida, Gainesville, FL, United States., Steuart R; Division of Hospital Medicine, Cincinnati Children's Medical Center, Cincinnati, OH, United States., Akande M; Department of Pediatrics, Oklahoma University Health Sciences Center, Oklahoma, OK, United States., Graham RJ; Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children's Hospital, Boston, MA, United States.
Jazyk:	angličtina
Zdroj:	Frontiers in pediatrics [Front Pediatr] 2021 Jul 02; Vol. 9, pp. 689485. Date of Electronic Publication: 2021 Jul 02 (Print Publication: 2021).
DOI:	10.3389/fped.2021.689485
Abstrakt:	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. Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. (Copyright © 2021 Heneghan, Sobotka, Hallman, Pinto, Killien, Palumbo, Murphy Salem, Mann, Smith, Steuart, Akande and Graham.)
Databáze:	MEDLINE
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