If You Build It, They Will Come: Initial Experience with a Multi-Disciplinary Pediatric Neurocritical Care Follow-Up Clinic

Abstract

Pediatric Neurocritical Care diagnoses account for a large proportion of intensive care admissions. Critical care survivors suffer high rates of long-term morbidity, including physical disability, cognitive impairment, and psychosocial dysfunction. To address these morbidities in Pediatric Neurocritical Care survivors, collaboration between Pediatric Neurology and Pediatric Critical Care created a multidisciplinary follow-up clinic providing specialized evaluations after discharge. Clinic referrals apply to all Pediatric Neurocritical Care patients regardless of admission severity of illness. Here, we report an initial case series, which revealed a population that is heterogenous in age, ranging from 1 month to 18 years, and in diagnoses. Traumatic brain injuries of varying severity as well as neuroinfectious and inflammatory diseases accounted for the majority of referrals. Most patients (87%) seen in the clinic had morbidities identified, requiring ongoing evaluation and expansion of the clinic. Cognitive and psychological disturbance were seen in over half of patients at the initial clinic follow-up. Sleep disturbances, daytime fatigue, headache or chronic pain, and vision or hearing concerns were also common at initial follow-up. Data from this initial population of clinic patients reiterates the need for specialized follow-up care, but also highlights the difficulties related to providing this comprehensive care and evaluating interventions to improve outcomes.

The Burden of Pediatric Neurocritical Care in the United States

“…[1] Some of these Pediatric Neurocritical Care (PNCC) diagnoses, such as TBI and hypoxic ischemic injury, have been associated with high mortality and survivors are at risk for substantial morbidity including physical disability, neurocognitive impairment, and psychosocial dysfunction. [9–18] These morbidities lead to significant impairment in quality of life and increased healthcare costs over time. [12, 19–26]…”

Optimizing Neurocritical Care Follow-Up Through the Integration of Neuropsychology

“…Over the last 20 years, advances in neurocritical care have reduced mortality rates of children, 1 creating a pressing need for providers to consider the long-term outcomes and morbidities of these patients. 2 Indeed, survivors of critical care often suffer long-term impairments in physical, psychological, cognitive, emotional, and social domains, collectively termed the postintensive care syndrome (PICS). After discharge, these children are often left with substantial treatment needs that go unrecognized and unmet due to limits in our present care models.…”

Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective

“…17 Interdisciplinary care models that integrate behavioral health and neuropsychological specialists within critical care teams have the potential to increase access to PICS-related resources and improve follow-up assessments and intervention for cognitive and psychological outcomes. 42 Research is needed to develop and evaluate educational interventions surrounding PICS for survivors and families to determine if increased awareness can impact access to care and outcomes. Potential interventions include direction to existing online resources such as those available through SCCM and at www.afterPICU.com, peer support through connection with other families and survivors, and institutional-specific educational efforts for providers and families.…”

“…During our initial clinic experience, many different PICS-related morbidities were identified among survivors and their family members, highlighting the difficulties in caring for this population. 42 Our initial experience with caring for PNCC survivors longitudinally also highlighted gaps in knowledge surrounding therapeutic interventions for many morbidities and the need for further research. We conducted this focus group study to determine outcomes important to our patients and their families and engage these families in identifying barriers to care and potential interventions to improve outcomes.…”