Post-intensive care syndrome in a cohort of infants & young children receiving integrated care via a pediatric critical care & neurotrauma recovery program: A pilot investigation.

Children treated in the pediatric intensive care unit (PICU) often face difficulties with long-term morbidities associated with neurologic injuries and lifesaving PICU interventions termed Post-Intensive Care Syndrome (PICS). In an effort to identify and address critical issues related to PICS, we developed an integrated model of care whereby children and families participate in follow-up clinics with a neuropsychologist and a critical care physician. To demonstrate preliminary impact, we present pilot findings on the early identification and treatment of PICS in a cohort of infants and young children in our program through a combination of multi-professional direct assessment and parent proxy questionnaires. Thirty-three infants and children, ages 3-72 months, participated in our initial follow-up clinic where issues related to physical health/recovery, development/cognition, mood/behavior, and quality of life were screened 1-3 months after discharge from the PICU. In comparison to pre-hospitalization functioning, direct assessment revealed new neurological concerns identified by the critical care physician in 33.3% of participants and new neurocognitive concerns identified by the neuropsychologist in 36.4% of participants. Caregiver reported measures showed significant issues with patient cognitive functioning, emotional functioning, sleep, and impact on the family. Participants and families experienced significant difficulties related to changes in functioning and disability. Parents/caregivers and clinicians demonstrated agreement on functioning across a variety of indicators; however, important divergence in assessments were also found highlighting the importance of multiple assessments and perspectives. New PICS morbidities are common in the early phase of recovery after discharge in infants, young children and their families. Results demonstrate the benefits and need for timely PICU follow-up care that involves collaboration/integration of physicians, neuropsychologists, and families to identify and treat PICS issues.