• Kathleen L Meert, Ron W Reeder, Aline B Maddux, Russell Banks, Robert A Berg, Christopher J Newth, Mark W Hall, Michael Quasney, Joseph A Carcillo, Patrick S McQuillen, Peter M Mourani, Ranjit S Chima, Richard Holubkov, Samuel Sorenson, Julie McGalliard, J Michael Dean, Jerry J Zimmerman, Life After Pediatric Sepsis Evaluation (LAPSE) Investigators, and following is a summary of LAPSE Performance Sites, Principal Investigators (PIs), Coinvestigators (CIs), Research Coordinators (RCs), and Allied Research Personnel.
• Department of Pediatrics, Children's Hospital of Michigan, Central Michigan University, Detroit, MI.
• Pediatr Crit Care Me. 2021 May 1; 22 (5): e302e313e302-e313.

ObjectivesTo serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children.DesignSecondary analysis of the Life after Pediatric Sepsis Evaluation investigation.SettingTwelve academic PICU in the United States.PatientsChildren greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock.InterventionsFamily caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life.Measurements And Main ResultsOf 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores.ConclusionsHealth-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.Copyright © 2021 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

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