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OBJECTIVES To 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. DESIGN Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING Twelve academic PICU in the United States. PATIENTS Children 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. INTERVENTIONS Family 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 RESULTS Of 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. CONCLUSIONS Health-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.

To develop and validate case definitions (computable phenotypes) to accurately identify neurosurgical and critical care events in children with traumatic brain injury.Prospective observational cohort study, May 2013 to September 2015.Two large U.S. children's hospitals with level 1 Pediatric Trauma Centers.One hundred seventy-four children less than 18 years old admitted to an ICU after traumatic brain injury.Prospective data were linked to database codes for each patient. The outcomes were prospectively identified acute traumatic brain injury, intracranial pressure monitor placement, craniotomy or craniectomy, vascular catheter placement, invasive mechanical ventilation, and new gastrostomy tube or tracheostomy placement. Candidate predictors were database codes present in administrative, billing, or trauma registry data. For each clinical event, we developed and validated penalized regression and Boolean classifiers (models to identify clinical events that take database codes as predictors). We externally validated the best model for each clinical event. The primary model performance measure was accuracy, the percent of test patients correctly classified. The cohort included 174 children who required ICU admission after traumatic brain injury. Simple Boolean classifiers were greater than or equal to 94% accurate for seven of nine clinical diagnoses and events. For central venous catheter placement, no classifier achieved 90% accuracy. Classifier accuracy was dependent on available data fields. Five of nine classifiers were acceptably accurate using only administrative data but three required trauma registry fields and two required billing data.In children with traumatic brain injury, computable phenotypes based on simple Boolean classifiers were highly accurate for most neurosurgical and critical care diagnoses and events. The computable phenotypes we developed and validated can be used in any observational study of children with traumatic brain injury and can reasonably be applied in studies of these interventions in other patient populations.

Objectives:In children with traumatic brain injury, 1) to describe the hospital discharge functional outcome and change from baseline function using the Functional Status Scale and 2) to determine any associations between discharge Functional Status Scale and age, injury mechanism, neurologic examin