Postdischarge Outcome Domains in Pediatric Critical Care and the Instruments Used to Evaluate Them: A Scoping Review
Authors: Maddux Aline B. , Pinto Neethi , Fink Ericka L. , Hartman Mary E. , Nett Sholeen , Biagas Katherine , Killien Elizabeth Y. , Dervan Leslie A. , Christie LeeAnn M. , Luckett Peter M. , Loftis Laura , Lackey Mellanye , Ringwood Melissa , Smith McKenna , Olson Lenora , Sorenson Sam , Meert Kathleen L. , Notterman Daniel A. , Pollack Murray M. , Mourani Peter M. , Watson R. Scott ,   for the Pediatric Outcomes STudies after PICU (POST-PICU) and PICU-COS Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Networks
Published: October 2020

Objectives:
Assessing outcomes after pediatric critical illness is imperative to evaluate practice and improve recovery of patients and their families. We conducted a scoping review of the literature to identify domains and instruments previously used to evaluate these outcomes.

Design:
Scoping review.

Setting:
We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Central Register of Controlled Trials Registry for studies evaluating pediatric critical care survivors or their families published between 1970 and 2017. We identified articles using key words related to pediatric critical illness and outcome domains. We excluded articles if the majority of patients were greater than 18 years old or less than 1 month old, mortality was the sole outcome, or only instrument psychometrics or procedural outcomes were reported. We used dual review for article selection and data extraction and categorized outcomes by domain (overall health, emotional, physical, cognitive, health-related quality of life, social, family).

Subjects:
Manuscripts evaluating outcomes after pediatric critical illness.

Interventions:
None.

Measurements and Main Results:
Of 60,349 citations, 407 articles met inclusion criteria; 87% were published after 2000. Study designs included observational (85%), interventional (7%), qualitative (5%), and mixed methods (3%). Populations most frequently evaluated were traumatic brain injury (n = 96), general pediatric critical illness (n = 87), and congenital heart disease (n = 72). Family members were evaluated in 74 studies (18%). Studies used a median of 2 instruments (interquartile range 1–4 instruments) and evaluated a median of 2 domains (interquartile range 2–3 domains). Social (n = 223), cognitive (n = 183), and overall health (n = 161) domains were most frequently studied. Across studies, 366 unique instruments were used, most frequently the Wechsler and Glasgow Outcome Scales. Individual domains were evaluated using a median of 77 instruments (interquartile range 39–87 instruments).

Conclusions:
A comprehensive, generalizable understanding of outcomes after pediatric critical illness is limited by heterogeneity in methodology, populations, domains, and instruments. Developing assessment standards may improve understanding of postdischarge outcomes and support development of interventions after pediatric critical illness.