Post-Intensive Care Syndrome in a Cohort of School-Aged Children and Adolescent ICU Survivors: The Importance of Follow-up in the Acute Recovery Phase

Abstract

Pediatric intensive care unit (PICU) survivors experience a collection of physical, cognitive, emotional, and social symptoms named post-intensive care syndrome (PICS). We aimed to quantify PICS morbidities from multiple stakeholder perspectives across domains. Using physician, neuropsychologist, and parent/caregiver-completed outcome measures across domains in a cross-sectional analysis of 186 children between the ages of 8 and 19 years with data from a PICU follow-up clinic 1 to 3 months after PICU discharge, we quantified PICS morbidities and used Spearman correlation to evaluate interdependence of PICS domains. Compared with pre-hospitalization functioning, new PICS-related morbidities were observed and significant correlations were identified between the PICS domains. Results highlight the need to identify and support patients and families for multiple morbidities simultaneously across all relevant PICS domains; moreover, an important divergence between caregiver report, physician, and neuropsychologist assessment was also found, showcasing the importance of multiple assessments and perspectives. New PICS morbidities across domains are common after discharge from the PICU, and timely follow-up care is needed that involves collaboration/integration of physicians, neuropsychologists, youth, and families to effectively identify and treat PICS-related issues.

Exposure to Sedation and Analgesia Medications: Short-term Cognitive Outcomes in Pediatric Critical Care Survivors With Acquired Brain Injury

“…[8][9][10][11][12][13][14][15][16][17][18] A recent study showed that more than a quarter of school-aged children and adolescents with ABI after PICU discharge met the diagnostic criteria for a new diagnosis of a neurocognitive disorder on expert evaluation, with the majority (66%) exhibiting concerns on evaluation not rising to the level of diagnosis but prompting need for additional clinical follow-up. 19 Consistent with prior research literature, the aforementioned study highlighted the potential for cognitive morbidity related to ABI within the executive functioning system. Considering executive functioning as a vital cognitive outcome is important because of its association with adaptive skill development, personality characteristics, social relationships, behavioral regulation, learning, and academic achievement in ABI survivors.…”

“…The rationale for use of the mentioned assessments as part of standard care in the acute recovery phase for ABI has been previously reported. 19,70,71,77…”

“…Youth seen in the PCCNRP in the acute phase of recovery 1 to 3 months after discharge undergo a neurocognitive screening battery. 19 Between September 2018 and November 2021, a total cohort of 91 patients were able to complete all assessments for this study. Because this study sought to evaluate cognitive outcomes that include several tasks related to executive function, participants only included children ≥8 years old at the time of follow-up.…”

Structured Multidisciplinary Follow-Up After Pediatric Intensive Care: A Model for Continuous Data-Driven Health Care Innovation

“…To our knowledge, no standardized structure for follow-up care after PICU admission exists. Current PICU follow-up programs (11)(12)(13)(14)(15)(16)(17) vary widely with respect to, among others, the included patients, involved health care professionals, follow-up moment(s), and assessed outcomes. Moreover, most PICU follow-up programs lack structured data collection (11), which is essential for health care evaluation and scientific research on outcome and prognosis of critically ill children.…”

“…Given the distinct heterogeneity of the PICU population and potential consequences in a wide range of outcome domains, the prognosis after PICU admission is uncertain, in turn challenging clinical follow-up. Currently, a few descriptions of PICU follow-up programs have emerged in the literature (11)(12)(13)(14)(15)(16)(17). To our knowledge, no standardized structure for follow-up care after PICU admission exists.…”