Abstract

Aims & Objectives: To create a multinational, multi-stakeholder informed Pediatric Intensive Care Unit (PICU) Core Outcome Set (COS). Methods: Outcomes were informed by a scoping review of post-hospital discharge PICU outcomes, interviews of children and families who experienced critical illness, and other resources. Outcomes and corresponding definitions were reviewed by the Collaborative Pediatric Critical Care Research Network’s Family Network Collaborative and an international steering committee (ISC). Participants (n=333) were recruited by the ISC and represented research, clinical, and family/advocate stakeholder groups. Participants in this IRB-approved, modified Delphi survey scored each outcome as not important, important not critical, or critical. Outcomes with ≥ 69% critical and ≤ 15% not important advanced to round 2 with write in outcomes considered. The ISC held an electronic consensus conference to determine the final PICU COS. Results: Overall response rates were 75% and 85% for each round. Participants voted on 7 global and 45 specific outcomes in Round 1, and 6 global and 30 specific outcomes in Round 2. Using Overall (3 stakeholder groups combined) results, consensus was defined as outcomes with < 15% “not important” and > 90% “critical” and were included in the final PICU COS: 4 global (Cognitive, Emotional, Physical and Overall Health) and 4 subdomains (Child Health-Related Quality of Life, Pain, Survival, and Communication) (Table). Families (n=21) suggested additional critically important outcomes that did not meet consensus now included in the PICU COS - Extended (Table).Conclusions: A PICU COS was created for implementation into research to assess post-PICU outcomes.

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