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Background/Objective: Pediatric intensive care unit (PICU) survivors risk significant cognitive morbidity, particularly those with acquired brain injury (ABI) diagnoses. Studies show sedative and analgesic medication may potentiate neurologic injury, but few studies evaluate impact on survivor outcomes. This study aimed to evaluate whether exposures to analgesic and sedative medications are associated with worse neurocognitive outcome. Methods: A retrospective cohort study was conducted of 91 patients aged 8 to 18 years, undergoing clinical neurocognitive evaluation approximately 1 to 3 months after PICU discharge. Electronic health data was queried for sedative and analgesic medication exposures, including opioids, benzodiazepines, propofol, ketamine, and dexmedetomidine. Doses were converted to class equivalents, evaluated by any exposure and cumulative dose exposure per patient weight. Cognitive outcome was derived from 8 objective cognitive assessments with an emphasis on executive function skills using Principal Components Analysis. Then, linear regression was used to control for baseline cognitive function estimates to calculate a standardized residualized neurocognitive index (rNCI) z-score. Multivariable linear regression evaluated the association between rNCI and medication exposure controlling for covariates. Significance was defined as P < .05. Results: Most (n = 80; 88%) patients received 1 or more study medications. Any exposure and higher cumulative doses of benzodiazepine and ketamine were significantly associated with worse rNCI in bivariate analyses. When controlling for Medicaid, preadmission comorbid conditions, length of stay, delirium, and receipt of other medication classes, receipt of benzodiazepine was associated with significantly worse rNCI (ß-coefficient = -0.48, 95% confidence interval = -0.88, -0.08). Conclusions: Exposure to benzodiazepines was independently associated with worse acute phase cognitive outcome using objective assessments focused on executive function skills when controlling for demographic and illness characteristics. Clinician decisions regarding medication regimens in the PICU may serve as a modifiable factor to improve outcomes. Additional inquiry into associations with long-term cognitive outcome and optimal medication regimens is needed.
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Analgesia , Lesões Encefálicas , Ketamina , Humanos , Criança , Ketamina/efeitos adversos , Estudos Retrospectivos , Hipnóticos e Sedativos/efeitos adversos , Analgésicos/efeitos adversos , Benzodiazepinas/efeitos adversos , Cuidados Críticos , Unidades de Terapia Intensiva Pediátrica , Cognição , Sobreviventes , Respiração ArtificialRESUMO
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.
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Lesões Encefálicas , Alta do Paciente , Criança , Humanos , Pré-Escolar , Seguimentos , Estudos Retrospectivos , Assistência ao Convalescente , Retorno à Escola , Unidades de Terapia Intensiva Pediátrica , Lesões Encefálicas/complicações , Lesões Encefálicas/diagnósticoRESUMO
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.
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Alta do Paciente , Qualidade de Vida , Idoso , Criança , Feminino , Estado Funcional , Humanos , Unidades de Terapia Intensiva Pediátrica , Estudos ProspectivosRESUMO
BACKGROUND/OBJECTIVE: Lingering morbidities including physical, cognitive, emotional, and psychosocial sequelae, termed the Post-Intensive Care Syndrome, persist years after pediatric neurocritical care (PNCC) hospitalization. Sleep disturbances impact other Post-Intensive Care Syndrome domains and are under-evaluated to date due to a lack of appropriate measurement tools. The present study evaluated the validity of the Sleep Disturbance Scale for Children (SDSC) to address the growing need for assessing sleep problems after PNCC. METHODS: We conducted a prospective observational study of youth aged 3-17 years with acquired brain injury (N = 69) receiving care through longitudinal PNCC programs at two tertiary academic medical centers. Parents completed the SDSC and provided proxy reports of internalizing symptoms, health-related quality of life (HRQOL), fatigue, pain behavior, and cognitive function within 3 months of hospital discharge. Evidence for the validity of the SDSC was established by utilizing the full sample for psychosocial measure comparisons and by comparing SDSC outcomes by severity (Low Risk, Mild-Moderate Risk, and High Risk defined by reported standardized T-scores). RESULTS: Internal consistency of the SDSC was good (α = .81). Within the full sample, increased sleep disturbances on the SDSC were significantly correlated with Post-Intensive Care Syndrome measures, including worse physical (r = .65), psychological (r = .62), and cognitive (r = - .74) sequelae. Youth in the High Risk group evidenced greater dysfunction in mental acuity, pain behavior, internalizing symptoms, and social engagement. Findings revealed both statistically and clinically significant impacts of sleep disturbances as measured by the SDSC on HRQOL. CONCLUSIONS: The SDSC is a valid and reliable measure for assessing sleep disturbances in children after PNCC. Results support the use of the SDSC to measure sleep disturbances after PNCC. Targeted interventions for sleep disturbances may be key to overall patient recovery.
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Lesões Encefálicas/fisiopatologia , Disfunção Cognitiva/fisiopatologia , Estado Terminal , Fadiga/fisiopatologia , Dor/fisiopatologia , Qualidade de Vida , Transtornos do Sono-Vigília/diagnóstico , Adolescente , Lesões Encefálicas Traumáticas/fisiopatologia , Criança , Pré-Escolar , Feminino , Humanos , Hipóxia Encefálica/fisiopatologia , Inflamação , Estudos Longitudinais , Masculino , Estudos Prospectivos , Reprodutibilidade dos Testes , Transtornos do Sono-Vigília/fisiopatologia , Acidente Vascular Cerebral/fisiopatologiaRESUMO
STUDY OBJECTIVES: We aimed to investigate the use of sleep efficiency (SE) as a measure of sleep disturbance in infants and toddlers with acquired brain injury (ABI) and evaluate associations between SE and child health-related quality of life and family outcomes. METHODS: Retrospective cohort study of 101 children ages 3-36 months who survived critical care for ABI. SE was quantified from the Brief Infant Sleep Questionnaire as a ratio of nighttime sleep to total time in bed; poor SE was defined as < 80%. Outcome measures included the Pediatric Quality of Life Inventory Core Total Score (health-related quality of life) and Family Impact Module Total Score. Spearman's correlation quantified associations between SE and outcomes. Multivariable linear regression tested association between poor SE and health-related quality of life controlling for significant covariates (age, diagnosis, comorbidities, worsening Functional Status Scale). RESULTS: Following ABI, median SE was 91.7 (interquartile range = 83.3, 95.5). Nineteen (19%) children had poor SE (< 80%). SE correlated significantly with quality of life (Spearman's correlation = .307) and Family Impact Module (Spearman's correlation = .309; both P < .01). When controlling for covariates, poor SE significantly increased risk for lower health-related quality of life (ß-coefficient = -7.0; 95% confidence interval= -13.4, -0.6). CONCLUSIONS: One in five infants and young children with ABI have poor SE that is associated with poorer child and family health outcomes. Our study underscores the potential importance of sleep following ABI to optimize recovery and the need for additional investigation of SE in infants and young children. CITATION: Klapp JM, Hall TA, Riley AR, Janzen D, Williams CN. Post-PICU sleep efficiency and quality of life in infants and toddlers with acquired brain injury. J Clin Sleep Med. 2024;20(1):75-83.
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Lesões Encefálicas , Distúrbios do Início e da Manutenção do Sono , Lactente , Humanos , Pré-Escolar , Criança , Qualidade de Vida , Estudos Retrospectivos , Sono , Lesões Encefálicas/complicações , Unidades de Terapia Intensiva PediátricaRESUMO
ABSTRACT: Despite its growing popularity, the implementation of Trauma-Informed Care (TIC) in standard medical practices remains insufficient. A workshop, featuring role-playing scenarios and individual self-reflection exercises, was developed to enhance compassion among health care providers. The workshop was created by a multidisciplinary team of community pediatricians, pediatric intensivists, psychologists, and palliative care physicians, was structured around key elements and principles of TIC, and was based on actual patient encounters. The 90-minute session included didactics, role-playing, writing and self-reflection exercises, and large-group debriefings, and it was presented at two academic meetings. It is currently available as an open-sourced, freely accessible website. The workshop was attended by individuals with varying levels of training and experience. Of approximated 80 participants, 39 responded to surveys about baseline knowledge and workshop satisfaction, and 24 completed self-perceived pre- and postknowledge surveys. Nearly 90% had limited prior exposure to TIC. All rated the workshop highly, with no significant differences based on workshop facilitation. Nearly 95% felt that they learned something that would impact their day-to-day practices. Self-perceived pre-post knowledge showed statistically significant improvements. This workshop is feasible and can potentially increase health care professionals' capacity to care, decrease moral injury, and alleviate burnout from difficult cases.
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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.
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Oxigenação por Membrana Extracorpórea , Sobreviventes , Humanos , Oxigenação por Membrana Extracorpórea/efeitos adversos , Oxigenação por Membrana Extracorpórea/métodos , Criança , Pré-Escolar , Masculino , Feminino , Lactente , Adolescente , Sobreviventes/estatística & dados numéricos , Sobreviventes/psicologia , Estudos Retrospectivos , Fatores de Risco , Adulto Jovem , Recém-NascidoRESUMO
BACKGROUND: Over 60,000 children with acquired brain injury (ABI) in the United States require admission to pediatric intensive care units annually. Over 50% suffer sleep-wake disturbances (SWDs) months after discharge. Given the importance of sleep to brain repair, we hypothesized that SWD would be associated with poorer health-related quality of life (HRQOL). METHODS: Cross-sectional analysis of prospectively collected data in children with ABI aged 3 to 18 years evaluated 1 to 3 months after critical care hospitalization (N = 151). SWD measured by Sleep Disturbances Scale for Children and defined as T-score ≥60 signifying moderate-severe risk of sleep disorders. HRQOL measured by Pediatric Quality of Life Inventory, which defines minimal clinically important difference as 4.5 points in total score. Secondary outcomes included scores for Physical, Emotional, Social, and School Function domains. SWD groups were compared with Mann-Whitney tests. Multiple linear regression evaluated association between SWD and HRQOL controlling for patient and ABI characteristics. Significance was defined as P < 0.05. RESULTS: SWDs were present in 66% (n = 100). HRQOL total score was significantly lower in children with SWD (median = 70; interquartile range [IQR] = 54, 80) versus without (median = 85; IQR = 67, 94; P < 0.001). Median scores in emotional, social, and school domains were significantly lower in SWD group (all P < 0.01). When controlling for age, sex, critical care interventions, preadmission comorbidities, and decline from preadmission Functional Status Scale, presence of SWD significantly reduced HRQOL total score nearly three times minimal clinically important difference (ß-coefficient = -12.1; 95% confidence Interval = -17.9, -6.2). CONCLUSIONS: SWD following ABI significantly decreased HRQOL overall and across multiple health domains. Sleep is potentially modifiable. Our data support future studies targeting sleep to improve outcomes after ABI.
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Lesões Encefálicas , Transtornos do Sono-Vigília , Humanos , Criança , Qualidade de Vida/psicologia , Estudos Transversais , Sono , Transtornos do Sono-Vigília/etiologiaRESUMO
Youth admitted to the pediatric intensive care unit (PICU) for traumatic brain injury (TBI) commonly struggle with long-term residual effects in the domains of physical, cognitive, emotional, and psychosocial/family functioning. In the cognitive domain, executive functioning (EF) deficits are often observed. The Behavior Rating Inventory of Executive Functioning, Second Edition (BRIEF-2) is a parent/caregiver-completed measure that is regularly utilized to assess caregivers' perspectives of daily EF abilities. Using parent/caregiver-completed measures like the BRIEF-2 in isolation as outcome measures for capturing symptom presence and severity might be problematic given that caregiver ratings are vulnerable to influence from external factors. As such, this study aimed to investigate the association between the BRIEF-2 and performance-based measures of EF in youth during the acute recovery period post-PICU admission for TBI. A secondary aim was to explore associations among potential confounding factors, including family-level distress, injury severity, and the impact of pre-existing neurodevelopmental conditions. Participants included 65 youths, 8-19 years of age, admitted to the PICU for TBI, who survived hospital discharge and were referred for follow-up care. Non-significant correlations were found between BRIEF-2 outcomes and performance-based measures of EF. Measures of injury severity were strongly correlated with scores from performance-based EF measures, but not BRIEF-2. Parent/caregiver-reported measures of their own health-related quality of life were related to caregiver responses on the BRIEF-2. Results demonstrate the differences captured by performance-based versus caregiver-report measures of EF, and also highlight the importance of considering other morbidities related to PICU admission.
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OBJECTIVE: The primary purpose of this study is to better understand current practices in the assessment of autism spectrum disorder (ASD) by neuropsychologists. METHODS: A 21-item survey regarding ASD assessment beliefs and practices was sent via email through neuropsychology listservs. The survey was accessed by 445 licensed psychologists who identified as neuropsychologists. A total of 367 surveys were deemed usable for data analysis. Descriptive statistics were used to characterize the full sample. Exploratory analyses were conducted between groups of interest, including primary population served (pediatric, adult, or lifespan), primary practice setting (medical center vs. private practice) and years in practice (< 5 years, 5 to 14 years, or 15+ years). RESULTS: Respondents were well-distributed across age range, years in practice, primary practice setting, and primary practice location. Almost all respondents (most of whom self-identified as pediatric-focused clinicians) believe that neuropsychologists should be able to competently rule in or out ASD and most received training in ASD assessment. Approximately 40% of respondents endorsed wanting more training in ASD assessment to increase their competence and confidence in making this differential diagnosis. Minimal differences in ASD beliefs and assessment practices were seen across years of practice or primary practice setting. Pediatric and lifespan clinicians had similar experience with ASD assessment practices, and both generally differed from adult clinicians. CONCLUSIONS: Our findings suggest many respondents desire further specialty ASD training for neuropsychologists. Additionally, the large majority of respondents indicated that future neuropsychologists should receive training in ASD assessment during graduate school, internship and/or post-doctoral fellowship.
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Transtorno do Espectro Autista , Internato e Residência , Adulto , Transtorno do Espectro Autista/diagnóstico , Criança , Humanos , Testes Neuropsicológicos , Neuropsicologia/educação , Inquéritos e QuestionáriosRESUMO
Children and adolescents who survive the pediatric intensive care unit (PICU) with an acquired brain injury (ABI) often demonstrate a variety of physical, cognitive, emotional/behavioral, and social sequelae termed post-intensive care syndrome (PICS). Social communication and interaction challenges have also been observed clinically, and there is growing literature documenting these occurrences in youth following ABI. The extent of these social changes varies among patients, and a subset of patients go on to exhibit social and behavioral profiles closely resembling those of autistic youth. We reviewed empirical research regarding social functioning in youth following ABI, as well as the overlap between individuals with ABI and autistic youth, published from January 2009 to August 2022 on PubMed and Scopus databases. Clinical case examples from a well-established post-PICU follow-up program are also provided to exemplify the complexity of this phenomenon.
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STUDY OBJECTIVES: Sleep disturbances impact over half of older children and teens with acquired brain injury (ABI) following critical care hospitalization but are underevaluated in infants and young children. Given the importance of sleep in brain development and healing after injury, we hypothesized sleep disturbances would be associated with worse neurodevelopmental outcomes in infants with ABI. METHODS: We performed a retrospective cohort study of 68 children aged 2-32 months following critical care hospitalization for ABI. The Brief Infant Sleep Questionnaire assessed sleep disturbances. Bayley Scales of Infant and Toddler Development, third edition and Adaptive Behavior Assessment System, third edition assessed developmental and adaptive functioning outcomes, respectively. t tests compared sleep characteristics in infants with ABI to historical healthy controls. Spearman's correlation evaluated relationships among sleep and outcomes. Multiple linear regression investigated relationships controlling for demographic and ABI characteristics. RESULTS: Compared to healthy controls, children with ABI had shorter nighttime sleep duration (P = .01), longer daytime sleep duration (P < .001), and longer duration of nighttime awakenings (P < .001). Duration of night awakenings negatively correlated with Bayley Cognitive scores (Spearman's correlation = -.40). Night awakenings negatively correlated with worse Adaptive Behavior Assessment System, third edition General Adaptive Composite scores (Spearman's correlation = -.42). When controlling for demographic and ABI characteristics, ≥ 3 awakenings was significantly associated with worse Adaptive Behavior Assessment System, third edition General Adaptive Composite (ß = -11.3; 95% confidence interval = -19.2, -3.5). CONCLUSIONS: Sleep disturbances are associated with poorer outcomes in infants and toddlers after ABI. Sleep is vital to recovery and a potentially modifiable target to improve outcomes. CITATION: Klapp JM, Hall TA, Riley AR, Williams CN. Sleep disturbances in infants and young children following an acquired brain injury. J Clin Sleep Med. 2022;18(10):2387-2395.
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Lesões Encefálicas , Transtornos do Sono-Vigília , Adaptação Psicológica , Adolescente , Lesões Encefálicas/complicações , Criança , Pré-Escolar , Humanos , Lactente , Estudos Retrospectivos , Sono , Transtornos do Sono-Vigília/complicaçõesRESUMO
Opioids are commonly used to treat pain in the pediatric intensive care unit (PICU), and many children receive opioid prescription(s) at discharge. The frequency of opioid prescriptions at discharge and associations with individual characteristics and clinical factors are unknown. This study aimed to identify (1) the number of children who receive an opioid prescription at PICU discharge and (2) the demographic and clinical factors associated with receiving an opioid prescription. Data were collected via the electronic medical record. The sample was 3345 children (birth to 18 years) admitted to the PICU and discharged to home or an inpatient rehabilitation setting. In total, 23.7% of children were prescribed an opioid at discharge. There were group differences in who received opioid prescriptions (yes/no) related to PICU diagnosis, length of hospital stay, number of days on mechanical ventilation, number of previous hospitalizations, organ dysfunction score, and admission type (surgical versus non-surgical). Binary logistic regression models examined predictors of opioid prescription at discharge for the total sample and diagnostic subgroups. Older age and surgical admission type were the most consistent predictors of receiving an opioid prescription. Future research should examine prescription usage patterns and how use of opioids is associated with pain and functional outcomes over time.
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Pediatric critical illness and injury, along with the experience of recovering from critical illness are among the most potentially traumatic experiences for children and their families. Additionally, children often come to the Pediatric Intensive Care Unit (PICU) with pre-existing trauma that may sensitize them to PICU-related distress. Trauma-informed care (TIC) in the PICU, while under-examined, has the potential to enhance quality of care, mitigate trauma-related symptoms, encourage positive coping, and provide anticipatory guidance for the recovery process. This narrative review paper first describes the need for TIC in the PICU and then introduces the principles of TIC as outlined by the American Academy of Pediatrics: awareness, readiness, detection and assessment, management, and integration. Current clinical practices within PICU settings are reviewed according to each TIC principle. Discussion about opportunities for further development of TIC programs to improve patient care and advance knowledge is also included.
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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.
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Prestação Integrada de Cuidados de Saúde , Qualidade de Vida , Criança , Pré-Escolar , Cuidados Críticos , Estado Terminal , Humanos , Lactente , Testes Neuropsicológicos , Projetos PilotoRESUMO
Over 50,000 children are hospitalized annually for traumatic brain injury (TBI) and face long-term cognitive morbidity. Over 50% develop sleep/wake disturbances (SWDs) that can affect brain development and healing. We hypothesized SWDs would portend worse executive function outcomes in children aged 3−18 years with TBI 1−3 months after hospital discharge. SWDs were defined using the Sleep Disturbances Scale for Children (t-scores ≥ 60). Outcomes included the Global Executive Composite (GEC, t-score) from the Behavior Rating Inventory of Executive Function, Second and Preschool Editions, and multiple objective executive function assessments combined through Principal Components Analysis into a Neurocognitive Index (NCI, z-score). Multiple linear regression evaluated associations between SWDs and executive function outcomes, controlling for covariates. Among 131 children, 68% had clinically significant SWDs, which were associated with significantly worse median scores on the GEC (56 vs. 45) and NCI (−0.02 vs. 0.42; both p < 0.05). When controlling for baseline characteristics and injury severity in multivariable analyses, SWDs were associated with worse GEC (ß-coefficient = 7.8; 95% Confidence Interval = 2.5, 13.1), and worse NCI (ß-coefficient = −0.4; 95% Confidence Interval = −0.8, −0.04). SWDs in children with TBI are associated with worse executive function outcomes after hospital discharge, and may serve as modifiable targets to improve outcomes.
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OBJECTIVES: Survivors of the PICU face long-term morbidities across health domains. In this study, we detail active PICU follow-up programs (PFUPs) and identify perceptions and barriers about development and maintenance of PFUPs. METHODS: A web link to an adaptive survey was distributed through organizational listservs. Descriptive statistics characterized the sample and details of existing PFUPs. Likert responses regarding benefits and barriers were summarized. RESULTS: One hundred eleven respondents represented 60 institutions located in the United States (n = 55), Canada (n = 3), Australia (n = 1), and the United Kingdom (n = 1). Details for 17 active programs were provided. Five programs included broad PICU populations, while the majority were neurocritical care (53%) focused. Despite strong agreement on the need to assess and treat morbidity across multiple health domains, 29% were physician only programs, and considerable variation existed in services provided by programs across settings. More than 80% of all respondents agreed PFUPs provide direct benefits and are essential to advancing knowledge on long-term PICU outcomes. Respondents identified "lack of support" as the most important barrier, particularly funding for providers and staff, and lack of clinical space, though successful programs overcome this challenge using a variety of funding resources. CONCLUSIONS: Few systematic multidisciplinary PFUPs exist despite strong agreement about importance of this care and direct benefit to patients and families. We recommend stakeholders use our description of successful programs as a framework to develop multidisciplinary models to elevate continuity across inpatient and outpatient settings, improve patient care, and foster collaboration to advance knowledge.
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Estado Terminal , Alta do Paciente , Criança , Estado Terminal/terapia , Seguimentos , Hospitais , Humanos , Inquéritos e Questionários , Estados UnidosRESUMO
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.
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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.
RESUMO
In the midst of concerns for potential neurodevelopmental effects after surgical anesthesia, there is a growing awareness that children who require sedation during critical illness are susceptible to neurologic dysfunctions collectively termed pediatric post-intensive care syndrome, or PICS-p. In contrast to healthy children undergoing elective surgery, critically ill children are subject to inordinate neurologic stress or injury and need to be considered separately. Despite recognition of PICS-p, inconsistency in techniques and timing of post-discharge assessments continues to be a significant barrier to understanding the specific role of sedation in later cognitive dysfunction. Nonetheless, available pediatric studies that account for analgesia and sedation consistently identify sedative and opioid analgesic exposures as risk factors for both in-hospital delirium and post-discharge neurologic sequelae. Clinical observations are supported by animal models showing neuroinflammation, increased neuronal death, dysmyelination, and altered synaptic plasticity and neurotransmission. Additionally, intensive care sedation also contributes to sleep disruption, an important and overlooked variable during acute illness and post-discharge recovery. Because analgesia and sedation are potentially modifiable, understanding the underlying mechanisms could transform sedation strategies to improve outcomes. To move the needle on this, prospective clinical studies would benefit from cohesion with regard to datasets and core outcome assessments, including sleep quality. Analyses should also account for the wide range of diagnoses, heterogeneity of this population, and the dynamic nature of neurodevelopment in age cohorts. Much of the related preclinical evidence has been studied in comparatively brief anesthetic exposures in healthy animals during infancy and is not generalizable to critically ill children. Thus, complementary animal models that more accurately "reverse translate" critical illness paradigms and the effect of analgesia and sedation on neuropathology and functional outcomes are needed. This review explores the interactive role of sedatives and the neurologic vulnerability of critically ill children as it pertains to survivorship and functional outcomes, which is the next frontier in pediatric intensive care.