Long-Term Neurobehavioral and Functional Outcomes of Pediatric Extracorporeal Membrane Oxygenation Survivors.

There are limited reports of neurobehavioral outcomes of children supported on extracorporeal membrane oxygenation (ECMO). This observational study aims to characterize the long-term (≥1 year) neurobehavioral outcomes, identify risk factors associated with neurobehavioral impairment, and evaluate the trajectory of functional status in pediatric ECMO survivors. Pediatric ECMO survivors ≥1-year postdecannulation and ≥3 years of age at follow-up were prospectively enrolled and completed assessments of adaptive behavior (Vineland Adaptive Behavior Scales, Third Edition [Vineland-3]) and functional status (Functional Status Scale [FSS]). Patient characteristics were retrospectively collected. Forty-one ECMO survivors cannulated at 0.0-19.8 years (median: 2.4 [IQR: 0.0, 13.1]) were enrolled at 1.3-12.8 years (median: 5.5 [IQR: 3.3, 6.5]) postdecannulation. ECMO survivors scored significantly lower than the normative population in the Vineland-3 Adaptive Behavior Composite (85 [IQR: 70, 99], P < 0.001) and all domains (Communication, Daily Living, Socialization, Motor). Independent risk factors for lower Vineland-3 composite scores included extracorporeal cardiopulmonary resuscitation, electrographic seizures during ECMO, congenital heart disease, and premorbid developmental delay. Of the 21 patients with impaired function at discharge (FSS ≥8), 86% reported an improved FSS at follow-up. Pediatric ECMO survivors have, on average, mild neurobehavioral impairment related to adaptive functioning years after decannulation. Continued functional recovery after hospital discharge is likely.

Follow-up after PICU discharge for patients with acquired brain injury: the role of an abbreviated neuropsychological evaluation and a return-to-school program.

Objective: To present the results of an abbreviated testing protocol used to screen for neurocognitive and psychological sequelae of critical illness among pediatric intensive care unit (PICU) survivors with acquired brain injury in our post-discharge follow-up programs, and describe our process for facilitating this population's return to academic life. Design: Retrospective cohort study. Setting: Neurocritical care follow-up programs at two U.S. academic, tertiary medical/surgical PICUs. Patients: Children age > 4 years enrolled in the neurocritical care follow-up programs (n=289) at these institutions who underwent neurocognitive and psychological testing between 2017-2021. Interventions: None. Measurements and Main Results: One month after discharge from the hospital, nearly half of the children and/or their parents (48%) in our neurocritical care follow-up programs identified some type of emotional or behavioral concern compared to their premorbid state, and 15% reported some type of cognitive concern. On evaluation, 35% of the children were given a new neurocognitive diagnosis. Neurocognitive domains regulated by the executive functioning system were the most commonly affected, including attention (54%), memory (31%) and processing speed (27%). One-quarter of the children were given a new psychological diagnosis, most commonly post-traumatic stress disorder (PTSD) or stress-related symptoms (12%). Over 80% of patients in the programs were given new recommendations for school, for both new academic services and new classroom accommodations. Over half of children (57%) were referred for comprehensive follow-up neuropsychological evaluation. Conclusions: Abbreviated neurocognitive and psychological evaluation successfully identifies the same deficits commonly found among PICU survivors who undergo longer, more complete testing protocols. When combined with services aimed at successfully re-integrating PICU survivors back to school, this focused evaluation can provide an effective and efficient means of screening for cognitive and emotional deficits among PICU survivors, and establish a rationale for early academic support upon the child's return to school.

Post-Intensive-Care Syndrome for the Pediatric Neurologist.

The number of children who survive critical illness has steadily increased. However, lower mortality rates have resulted in a proportional increase in post-intensive-care morbidity. Critical illness in childhood affects a child's development, cognition, and family functioning. The constellation of physical, emotional, cognitive, and psychosocial symptoms that begin in the intensive care unit and continue after discharge has recently been termed post-intensive-care syndrome. A conceptual model of the post-intensive-care syndrome experienced by children who survive critical illness, their siblings, and parents has been coined post-intensive-care syndrome in pediatrics. Owing to their prolonged hospitalizations, the use of sedative medications, and the nature of their illness, children with primary neurological injury are among those at the highest risk for post-intensive-care syndrome in pediatrics. The pediatric neurologist participates in the care of children with acute brain injury throughout their hospitalization and remains involved after the patient leaves the hospital. Hence it is important for pediatric neurologists to become versed in the early recognition and management of post-intensive-care syndrome in pediatrics. In this review, we discuss the current knowledge regarding post-intensive-care syndrome in pediatrics and its risk factors. We also discuss our experience establishing Pediatric Neurocritical Care Recovery Programs at two large academic centers. Last, we provide a battery of validated tests to identify and manage the different aspects of post-intensive-care syndrome in pediatrics, which have been successfully implemented at our institutions. Dissemination of this "road map" may assist others interested in establishing recovery programs, therefore mitigating the burden of post-intensive-care morbidity in children.

Sleep-Wake Disturbances After Acquired Brain Injury in Children Surviving Critical Care.

BACKGROUND: Sleep-wake disturbances are underevaluated among children with acquired brain injury surviving critical care. We aimed to quantify severity, phenotypes, and risk factors for sleep-wake disturbances. METHODS: We performed a prospective cohort study of 78 children aged ≥3 years with acquired brain injury within three months of critical care hospitalization. Diagnoses included traumatic brain injury (n = 40), stroke (n = 11), infectious or inflammatory disease (n = 10), hypoxic-ischemic injury (n = 9), and other (n = 8). Sleep Disturbances Scale for Children standardized T scores measured sleep-wake disturbances. Overall sleep-wake disturbances were dichotomized as any total or subscale T score ≥60. Any T score ≥70 defined severe sleep-wake disturbances. Subscale T scores ≥60 identified sleep-wake disturbance phenotypes. RESULTS: Sleep-wake disturbances were identified in 44 (56%) children and were classified as severe in 36 (46%). Sleep-wake disturbances affected ≥33% of patients within each diagnosis and were not associated with severity of illness measures. The most common phenotype was disturbance in initiation and maintenance of sleep (47%), although 68% had multiple concurrent sleep-wake disturbance phenotypes. One third of all patients had preadmission chronic conditions, and this increased risk for sleep-wake disturbances overall (43% vs 21%, P = 0.04) and in the traumatic brain injury subgroup (52% vs 5%, P = 0.001). CONCLUSIONS: Over half of children surviving critical care with acquired brain injury have sleep-wake disturbances. Most of these children have severe sleep-wake disturbances independent of severity of illness measures. Many sleep-wake disturbances phenotypes were identified, but most children had disturbance in initiation and maintenance of sleep. Our study underscores the importance of evaluating sleep-wake disturbances after acquired brain injury.

Postintensive Care Syndrome in Pediatric Critical Care Survivors: Therapeutic Options to Improve Outcomes After Acquired Brain Injury.

PURPOSE OF REVIEW: Children surviving the pediatric intensive care unit (PICU) with neurologic illness or injury have long-term morbidities in physical, cognitive, emotional, and social functioning termed postintensive care syndrome (PICS). In this article, we review acute and longitudinal management strategies available to combat PICS in children with acquired brain injury. RECENT FINDINGS: Few intervention studies in this vulnerable population target PICS morbidities. Small studies show promise for both inpatient- and outpatient-initiated therapies, mainly focusing on a single domain of PICS and evaluating heterogeneous populations. While evaluating the effects of interventions on longitudinal PICS outcomes is in its infancy, longitudinal clinical programs targeting PICS are increasing. A multidisciplinary team with inpatient and outpatient presence is necessary to deliver the holistic integrated care required to address all domains of PICS in patients and families. While PICS is increasingly recognized as a chronic problem in PICU survivors with acquired brain injury, few interventions have targeted PICS morbidities. Research is needed to improve physical, cognitive, emotional, and social outcomes in survivors and their families.

Brief report: Under-representation of African americans in autism genetic research: a rationale for inclusion of subjects representing diverse family structures.

African American children with autism are seriously under-represented in existing genetic registries and biomedical research studies of autism. We estimated the number of African American children with autism in the St. Louis region using CDC surveillance data and present the outcomes of a concerted effort to enroll approximately one-third of that population into either of two large national genetic autism registries. The results revealed that even after traditional barriers to research participation were addressed and all contacted families expressed a willingness to participate, 67% of the reachable families were disqualified from participation because of family structure alone. Comprehensive efforts-including expansion of eligibility to families of diverse structure-are warranted to facilitate the inclusion of African American children in biomedical research.