The Association Between Functional Status and Health-Related Quality of Life Following Discharge from the Pediatric Intensive Care Unit.

BACKGROUND: Despite one third of children with acquired brain injury (ABI) experiencing new functional impairments following critical care admission, there is limited research investigating the impact of new functional impairments on overall health-related quality of life (HRQOL) or among important HRQOL domains. We aimed to investigate the association between new functional impairments, measured by the Functional Status Scale (FSS), and HRQOL in pediatric patients with ABI after critical care. METHODS: We conducted a secondary analysis of a prospective observational study of 275 children aged 2 months to 18 years with ABI. The primary exposure evaluated was change in FSS from baseline at hospital discharge, categorized per prior work (no change, 1-2 point increase, and ≥ 3 point increase). The primary outcome was overall HRQOL 6 months after hospital discharge, measured by the Pediatric Quality of Life Inventory (PedsQL) total score. Secondary outcomes were PedsQL domain scores. PedsQL total and domain scores were transformed into age-standardized z scores for analyses. Multiple linear regression models evaluated the association between FSS change category and HRQOL (overall and domain z scores) when controlling for demographic and clinical characteristics and were reported as ß-coefficients with 95% confidence intervals. RESULTS: Complete data were analyzed for 195 (71%) children, including 127 with traumatic brain injury. New functional impairment was common with 32 (16%) patients experiencing FSS increases ≥ 3, 50 (26%) patients with FSS increases of 1-2 points, and 113 (58%) patients with no change from prehospital baseline. The majority of children (63%) demonstrated HRQOL ratings ≥ 1 standard deviation below healthy age-based standards (z scores ≤ - 1). Regression models demonstrated older age, female sex, presence of comorbidities, and preadmission cardiopulmonary resuscitation were all significantly associated with poorer overall HRQOL (all p < 0.05). FSS increase ≥ 3 at discharge was significantly associated with worse overall HRQOL at follow-up (ß = - 1.07; 95% confidence interval = - 1.63 to - 0.52) when controlling for the aforementioned significant factors, and significantly improved model fit (p value for change = 0.001). Similar findings in secondary analyses were found for physical domain scores, with FSS increase showing a significant association with worse physical HRQOL scores and improvements in model fit. Change in FSS was not significantly associated with other HRQOL domain scores (emotional, social, school, psychosocial). CONCLUSIONS: Many children with ABI after critical care experience new functional impairments (FSS increases) and worse HRQOL than healthy peers. FSS increase at discharge is a significant risk factor for worse HRQOL in the months after hospital discharge and improves HRQOL models beyond illness and demographic variables alone.

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.

"If it's worth my time, i will make the time": school-based providers' decision-making about participating in an evidence-based psychotherapy consultation program.

This study evaluated influences on school-based clinicians' decision-making surrounding participation in a modular psychotherapy training and consultation program lasting one academic year. Clinicians were recruited from three participation groups: those who never engaged, those who engaged and then discontinued, and those who participated fully. Qualitative interviews explored influences on initial and continued participation, as well as differences in decision-making by participation group, knowledge about evidence-based practices, and attitudes toward evidence-based practices. Eight major themes were identified: time, practice utility, intervention/training content, training process, attitudes toward training, social influences, commitment to training, and expectations. Some themes were discussed universally across all comparison groups, while others varied in frequency or content. Recommendations for increasing participation are presented, based on the findings.

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.

OBJECTIVE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

Parental Posttraumatic Stress Symptoms in the Context of Pediatric Post Intensive Care Syndrome: Impact on the Family and Opportunities for Intervention.

OBJECTIVE: Pediatric intensive care unit (PICU) survivors and their families experience ongoing impacts on physical, cognitive, and psychosocial functioning, described as Post-Intensive Care Syndrome (PICS). The objective of this study was to determine whether the posttraumatic stress symptoms (PTSS) of parents predict the impact of critical illness on families following PICU admission beyond other factors (e.g., sex, race/ethnicity, age, insurance status, illness severity, family involvement or death). METHOD: We conducted a retrospective analysis of data from 88 children aged 1 month to 18 years who were hospitalized with critical illness and acquired brain injury in the PICU and their families. Patients and their families participated in a 1-3 month post-discharge follow-up assessment, during which data on demographics, medical diagnoses, parent self-report of PTSS, and family impact of critical illness (via the Pediatric Quality of Life Family Impact Module) were collected. We used a hierarchical linear regression to determine whether parent PTSS predicted family impact above and beyond demographic and injury/illness factors. RESULTS: One-third of parents reported elevated PTSS. Among those with complete available data (n = 56), PTSS were the only significant predictor of family impact (ß = -.52, t = -3.58, p = .001), with the overall model accounting for 41% of variance. CONCLUSION: In addition to the direct effects on parents of children who survive the PICU, PTSS may negatively impact families and interfere with rehabilitative progress. We provide a rationale and conceptual model for integrating interventions designed to address parent PTSS into post-PICU care.

Emotional Aspects of Pediatric Post-Intensive Care Syndrome Following Traumatic Brain Injury.

Children with traumatic brain injury (TBI) requiring neurocritical care are at risk for neurocognitive, emotional, physical, and psychosocial difficulties, collectively known as Post-Intensive Care Syndrome. Our study assessed parent-reported emotional functioning and identified risk factors for emotional sequelae in the acute recovery phase. Fifty-three children between 5 and 18 years old hospitalized for TBI were assessed 1-month following discharge. Relevant injury-, child-, and family-specific variables were collected. Emotional functioning was assessed using PROMIS Parent Proxy Report Short Forms for Anxiety and Depressive Symptoms. We used Chi-square tests to evaluate differences between children with and without elevations in anxiety and depressive symptoms. Logistic regression determined predictors of elevations in symptoms among significant variables. Parents frequently endorsed moderate or worse anxiety (45.2%) and depressive (32.1%) symptoms among children. Mechanism of injury and elevated parent post-traumatic stress disorder (PTSD) symptoms were associated with elevated anxiety and depressive symptoms, while direct family involvement in the accident/injury was associated only with elevated anxiety symptoms. Results from logistic regression indicated that only elevated parent PTSD symptoms were a significant predictor for child anxiety and depressive symptoms. Anxiety and depressive symptoms are prevalent in the acute recovery phase of TBI. Consistent with previous research, elevations in anxiety and depressive symptoms were more related to psychosocial factors than injury severity. High levels of parent PTSD symptoms and their relationship with children's internalizing symptoms highlight the need for mental health treatment for TBI patients and their families.

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.