Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder.

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness. The purpose of this pilot study was to examine and compare the initial psychometric properties of a series of commonly used standardized and norm-referenced measures of cognition and adaptive functioning as well as alternative measures of neurobehavioral functioning designed to capture responsivity (i.e., alertness, awareness, responsivity to the environment) in those with acquired brain injuries in a sample of individuals with severe to profound functional impairment associated with a neurogenetic etiology. Ten individuals (median age = 7.5 years, IQR = 4.8-11.5, range 4-21; n = 8 male) with severe to profound functional impairment associated with SCN2A-Related Disorder and their parents were included in this study. Parents completed the Vineland Adaptive Behavior Scales, Third Edition Comprehensive Interview (Vineland-3) and the Developmental Profile, Fourth Edition Cognitive Scale (DP-4) and their children completed the Bayley Scales of Infant and Toddler Development Cognitive Scale (Bayley-4; given out of the standardized age-range) and two measures of responsivity, the Coma Recovery Scale, Pediatric and the Rappaport Coma/Near Coma Scale. Results demonstrated exceptionally low skills (median Vineland-3 Adaptive Behavior Composite = 35.5) and frequent floor effects across norm-referenced measures (i.e., Vineland-3, DP-4, Bayley-4); however, raw scores yielded more range and variability and no absolute floor effects. There were also no floor effects on measures of responsivity and findings suggest that these alternative tools may capture more variability in some aspects of neurobehavioral functioning that are critical to higher order cognitive functions, particularly for those with mental-ages below a 12 month-level. Initial evidence of construct validity of all measures in this population was shown. Findings support ongoing investigation of measures of responsivity and identified areas of potential measure modification that may improve applicability for individuals with severe to profound functional impairment associated with neurogenetic as opposed to acquired etiologies.

Corrigendum: Post-discharge outcomes of hospitalized children diagnosed with acute SARS-CoV-2 or MIS-C.

[This corrects the article DOI: 10.3389/fped.2024.1340385.].

Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment.

OBJECTIVE: Examine initial feasibility/utility of a telephone-administered measure in describing impact of child health on caregiver/family functioning in patients with a history of a disorder of consciousness (DoC) due to severe-acquired brain injury (ABI). METHOD: Caregivers of patients admitted at least 1 year prior for inpatient rehabilitation with DoC completed a battery of measures administered via telephone examining the impact of child health on caregiver/family functioning (Pediatric Quality of Life Family Impact Module; PedsQL-FIM) and child functioning. RESULTS: Forty-one caregivers of unique patients (age = 5-22 years; M = 14.9, SD = 5.1; 63% male; time since injury = 1-18 years; M = 5.3; SD = 4.2) completed the telephone measures. PedsQL-FIM floor and ceiling effects were minimal (administration time = 5-16 min, M = 7.4; SD = 2.8). Family functioning was lowest in Daily Activities and highest in Family Relationships. Relative to caregivers of patients with mild-severe ABI, caregivers reported lower caregiver/family functioning. Correlations were moderate between child functioning and caregiver/family functioning on some PedsQL-FIM scales. CONCLUSIONS: Within this relatively small convenience sample, results indicate the PedsQL-FIM administered via telephone is feasible and useful in describing the impact of child health on caregiver/family functioning long after DoC associated with ABI. Future studies are needed to understand factors contributing to caregiver/family functioning to inform targeted interventions.

Post-discharge outcomes of hospitalized children diagnosed with acute SARS-CoV-2 or MIS-C.

Introduction: Hospitalized children diagnosed with SARS-CoV-2-related conditions are at risk for new or persistent symptoms and functional impairments. Our objective was to analyze post-hospital symptoms, healthcare utilization, and outcomes of children previously hospitalized and diagnosed with acute SARS-CoV-2 infection or Multisystem Inflammatory Syndrome in Children (MIS-C). Methods: Prospective, multicenter electronic survey of parents of children <18 years of age surviving hospitalization from 12 U.S. centers between January 2020 and July 2021. The primary outcome was a parent report of child recovery status at the time of the survey (recovered vs. not recovered). Secondary outcomes included new or persistent symptoms, readmissions, and health-related quality of life. Multivariable backward stepwise logistic regression was performed for the association of patient, disease, laboratory, and treatment variables with recovered status. Results: The children [n = 79; 30 (38.0%) female] with acute SARS-CoV-2 (75.7%) or MIS-C (24.3%) had a median age of 6.5 years (interquartile range 2.0-13.0) and 51 (64.6%) had a preexisting condition. Fifty children (63.3%) required critical care. One-third [23/79 (29.1%)] were not recovered at follow-up [43 (31, 54) months post-discharge]. Admission C-reactive protein levels were higher in children not recovered vs. recovered [5.7 (1.3, 25.1) vs. 1.3 (0.4, 6.3) mg/dl, p = 0.02]. At follow-up, 67% overall had new or persistent symptoms. The most common symptoms were fatigue (37%), weakness (25%), and headache (24%), all with frequencies higher in children not recovered. Forty percent had at least one return emergency visit and 24% had a hospital readmission. Recovered status was associated with better total HRQOL [87 (77, 95) vs. 77 (51, 83), p = 0.01]. In multivariable analysis, lower admission C-reactive protein [odds ratio 0.90 (95% confidence interval 0.82, 0.99)] and higher admission lymphocyte count [1.001 (1.0002, 1.002)] were associated with recovered status. Conclusions: Children considered recovered by their parents following hospitalization with SARS-CoV-2-related conditions had less symptom frequency and better HRQOL than those reported as not recovered. Increased inflammation and lower lymphocyte count on hospital admission may help to identify children needing longitudinal, multidisciplinary care. Clinical Trial Registration: ClinicalTrials.gov (NCT04379089).

Sedation Research in Critically Ill Pediatric Patients: Proposals for Future Study Design From the Sedation Consortium on Endpoints and Procedures for Treatment, Education, and Research IV Workshop.

OBJECTIVES: Sedation and analgesia for infants and children requiring mechanical ventilation in the PICU is uniquely challenging due to the wide spectrum of ages, developmental stages, and pathophysiological processes encountered. Studies evaluating the safety and efficacy of sedative and analgesic management in pediatric patients have used heterogeneous methodologies. The Sedation Consortium on Endpoints and Procedures for Treatment, Education, and Research (SCEPTER) IV hosted a series of multidisciplinary meetings to establish consensus statements for future clinical study design and implementation as a guide for investigators studying PICU sedation and analgesia. DESIGN: Twenty-five key elements framed as consensus statements were developed in five domains: study design, enrollment, protocol, outcomes and measurement instruments, and future directions. SETTING: A virtual meeting was held on March 2-3, 2022, followed by an in-person meeting in Washington, DC, on June 15-16, 2022. Subsequent iterative online meetings were held to achieve consensus. SUBJECTS: Fifty-one multidisciplinary, international participants from academia, industry, the U.S. Food and Drug Administration, and family members of PICU patients attended the virtual and in-person meetings. Participants were invited based on their background and experience. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Common themes throughout the SCEPTER IV consensus statements included using coordinated multidisciplinary and interprofessional teams to ensure culturally appropriate study design and diverse patient enrollment, obtaining input from PICU survivors and their families, engaging community members, and using developmentally appropriate and validated instruments for assessments of sedation, pain, iatrogenic withdrawal, and ICU delirium. CONCLUSIONS: These SCEPTER IV consensus statements are comprehensive and may assist investigators in the design, enrollment, implementation, and dissemination of studies involving sedation and analgesia of PICU patients requiring mechanical ventilation. Implementation may strengthen the rigor and reproducibility of research studies on PICU sedation and analgesia and facilitate the synthesis of evidence across studies to improve the safety and quality of care for PICU patients.

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group in the Pediatric Population.

BACKGROUND: The fundamental gap obstructing forward progress of evidenced-based care in pediatric and neonatal disorders of consciousness (DoC) is the lack of defining consensus-based terminology to perform comparative research. This lack of shared nomenclature in pediatric DoC stems from the inherently recursive dilemma of the inability to reliably measure consciousness in the very young. However, recent advancements in validated clinical examinations and technologically sophisticated biomarkers of brain activity linked to future abilities are unlocking this previously formidable challenge to understanding the DoC in the developing brain. METHODS: To address this need, the first of its kind international convergence of an interdisciplinary team of pediatric DoC experts was organized by the Neurocritical Care Society's Curing Coma Campaign. The multidisciplinary panel of pediatric DoC experts proposed pediatric-tailored common data elements (CDEs) covering each of the CDE working groups including behavioral phenotyping, biospecimens, electrophysiology, family and goals of care, neuroimaging, outcome and endpoints, physiology and big Data, therapies, and pediatrics. RESULTS: We report the working groups' pediatric-focused DoC CDE recommendations and disseminate CDEs to be used in studies of pediatric patients with DoC. CONCLUSIONS: The CDEs recommended support the vision of progressing collaborative and successful internationally collaborative pediatric coma research.

Head Control Contributes to Prediction of Emergence From the Minimally Conscious State in Children Admitted to Inpatient Rehabilitation.

OBJECTIVE: To examine the utility of head and trunk control, assessed using the Physical Abilities and Mobility Scale, for predicting emergence from a minimally conscious state (eMCS) among children with acquired brain injury admitted to inpatient rehabilitation in a disorder of consciousness (DoC). DESIGN: Retrospective study. SETTING: Pediatric inpatient rehabilitation hospital. PARTICIPANTS: Forty patients (2-21 years-old) directly admitted from acute care to pediatric inpatient brain injury rehabilitation in a DoC (average length of stay=85 days; N=40). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: State of consciousness (eMCS vs not) at discharge from inpatient rehabilitation. RESULTS: Forty-five percent of patients emerged from a minimally conscious state during inpatient rehabilitation. Admission state of consciousness and head control (but not trunk control) were significantly associated with eMCS and provided complementary prognostic information. Admission state of consciousness (ie, admitting in a vegetative state/unresponsive wakefulness syndrome) afforded the greatest negative predictive value (93.8%), whereas admission head control ability afforded the greatest positive predictive value (81.8% for any independent head control; 100% for maintaining head-up position for >30 seconds). Fifty percent of patients who emerged during the inpatient stay did not have independent head control at admission, highlighting the importance of exploring head control as a prognostic marker in conjunction with indicators with greater sensitivity (eg, state of consciousness at admission). CONCLUSIONS: A brief measure of head control at admission may contribute to identification of a subgroup of patients who are likely to emerge.

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Behavioral Phenotyping.

BACKGROUND: The recent publication of practice guidelines for management of patients with disorders of consciousness (DoC) in the United States and Europe was a major step forward in improving the accuracy and consistency of terminology, diagnostic criteria, and prognostication in this population. There remains a pressing need for a more precise brain injury classification system that combines clinical semiology with neuroimaging, electrophysiologic, and other biomarker data. To address this need, the National Institute of Neurological Disorders and Stroke launched the Common Data Elements (CDEs) initiative to facilitate systematic collection of high-quality research data in studies involving patients with neurological disease. The Neurocritical Care Society's Curing Coma Campaign expanded this effort in 2018 to develop CDEs for DoC. Herein, we present CDE recommendations for behavioral phenotyping of patients with DoC. METHODS: The Behavioral Phenotyping Workgroup used a preestablished, five-step process to identify and select candidate CDEs that included review of existing National Institute of Neurological Disorders and Stroke CDEs, nomination and systematic vetting of new CDEs, CDE classification, iterative review, and approval of panel recommendations and development of corresponding case review forms. RESULTS: We identified a slate of existing and newly proposed basic, supplemental, and exploratory CDEs that can be used for behavioral phenotyping of adult and pediatric patients with DoC. CONCLUSIONS: The proposed behavioral phenotyping CDEs will assist with international harmonization of DoC studies and allow for more precise characterization of study cohorts, favorably impacting observational studies and clinical trials aimed at improving outcome in this population.

Scoping Review on the Diagnosis, Prognosis, and Treatment of Pediatric Disorders of Consciousness.

BACKGROUND AND OBJECTIVES: Comprehensive guidelines for the diagnosis, prognosis, and treatment of disorders of consciousness (DoC) in pediatric patients have not yet been released. We aimed to summarize available evidence for DoC with >14 days duration to support the future development of guidelines for children, adolescents and young adults aged 6 months-18 years. METHODS: This scoping review was reported based on Preferred Reporting Items for Systematic reviews and Meta-Analyses-extension for Scoping Reviews guidelines. A systematic search identified records from 4 databases: PubMed, Embase, Cochrane Library, and Web of Science. Abstracts received 3 blind reviews. Corresponding full-text articles rated as "in-scope" and reporting data not published in any other retained article (i.e., no double reporting) were identified and assigned to 5 thematic evaluating teams. Full-text articles were reviewed using a double-blind standardized form. Level of evidence was graded, and summative statements were generated. RESULTS: On November 9, 2022, 2,167 documents had been identified; 132 articles were retained, of which 33 (25%) were published over the past 5 years. Overall, 2,161 individuals met the inclusion criteria; female patients were 527 of 1,554 (33.9%) cases included, whose sex was identifiable. Of 132 articles, 57 (43.2%) were single case reports and only 5 (3.8%) clinical trials; the level of evidence was prevalently low (80/132; 60.6%). Most studies included neurobehavioral measures (84/127; 66.1%) and neuroimaging (81/127; 63.8%); 59 (46.5%) were mainly related to diagnosis, 56 (44.1%) to prognosis, and 44 (34.6%) to treatment. Most frequently used neurobehavioral tools included the Coma Recovery Scale-Revised, Coma/Near-Coma Scale, Level of Cognitive Functioning Assessment Scale, and Post-Acute Level of Consciousness scale. EEG, event-related potentials, structural CT, and MRI were the most frequently used instrumental techniques. In 29/53 (54.7%) cases, DoC improvement was observed, which was associated with treatment with amantadine. DISCUSSION: The literature on pediatric DoCs is mainly observational, and clinical details are either inconsistently presented or absent. Conclusions drawn from many studies convey insubstantial evidence and have limited validity and low potential for translation in clinical practice. Despite these limitations, our work summarizes the extant literature and constitutes a base for future guidelines related to the diagnosis, prognosis, and treatment of pediatric DoC.

Traumatic Brain Injury Positive Strategies for Families: A Pilot Randomized Controlled Trial of an Online Parent-Training Program.

OBJECTIVE: To determine program satisfaction and preliminary efficacy of Traumatic Brain Injury Positive Strategies (TIPS), a web-based training for parenting strategies after child brain injury. DESIGN: A randomized controlled trial with parallel assignment to TIPS intervention or usual-care control (TAU). The three testing time-points were pretest, posttest within 30 days of assignment, and 3-month follow-up. Reported in accordance with CONSORT extensions to randomized feasibility and pilot trials SETTING: Online. PARTICIPANTS: Eighty-three volunteers recruited nationally who were 18 years of age or older, U.S. residents, English speaking and reading, had access to high-speed internet, and were living with and caring for a child who was hospitalized overnight with a brain injury (ages 3-18 years, able to follow simple commands; N=83). INTERVENTIONS: Eight interactive behavioral training modules on parent strategies. The usual-care control was an informational website. MAIN OUTCOME MEASURES: The proximal outcomes were User Satisfaction, Usefulness, Usability, Feature Preference, Strategy Utilization and Effectiveness, and Learning and Self-Efficacy for TIPS program participants. The primary outcomes were: Strategy Knowledge, Application, and Strategy-Application Confidence; Family Impact Module of Pediatric Quality of Life Inventory (PedsQL); and Caregiver Self-Efficacy Scale. The secondary outcomes were TIPS vs TCore PedsQL and Health Behavior Inventory (HBI) RESULTS: Pre- and posttest assessments were completed by 76 of 83 caregivers; 74 completed their 3-month follow-up. Linear growth models indicated that relative to TAU, TIPS yielded greater increases in Strategy Knowledge over the 3-month study (d=.61). Other comparisons did not reach significance. Outcomes were not moderated by child age, SES, or disability severity measured by Cognitive Function Module of PedsQL. All TIPS participants were satisfied with the program. CONCLUSIONS: Of the 10 outcomes tested, only TBI knowledge significantly improved relative to TAU.

Long-term function, quality of life and healthcare utilization among survivors of pediatric out-of-hospital cardiac arrest.

BACKGROUND: Survival following pediatric out-of-hospital cardiac arrest (OHCA) has improved over the past 2 decades but data on survivors' long-term outcomes are limited. We aimed to evaluate long-term outcomes in pediatric OHCA survivors more than one year after cardiac arrest. METHODS: OHCA survivors <18 years old who received post-cardiac arrest care in the PICU at a single center between 2008-2018 were included. Parents of patients <18 years and patients ≥18 years at least one year after cardiac arrest completed a telephone interview. We assessed neurologic outcome (Pediatric Cerebral Performance Category [PCPC]), activities of daily living (Pediatric Glasgow Outcomes Scale-Extended, Functional Status Scale (FSS)), HRQL (Pediatric Quality of Life Core and Family Impact Modules), and healthcare utilization. Unfavorable neurologic outcome was defined as PCPC > 1 or worsening from pre-arrest baseline to discharge. FINDINGS: Forty four patients were evaluable. Follow-up occurred at a median of 5.6 years [IQR 4.4, 8.9] post-arrest. Median age at arrest was 5.3 [1.3,12.6] years; median CPR duration was 5 [1.5, 7] minutes. Survivors with unfavorable outcome at discharge had worse FSS Sensory and Motor Function scores and higher rates of rehabilitation service utilization. Parents of survivors with unfavorable outcome reported greater disruption to family functioning. Healthcare utilization and educational support requirements were common among all survivors. CONCLUSIONS: Survivors of pediatric OHCA with unfavorable outcome at discharge have more impaired function multiple years post-arrest. Survivors with favorable outcome may experience impairments and significant healthcare needs not fully captured by the PCPC at hospital discharge.

Functional Recovery During Inpatient Rehabilitation in Children With Anoxic or Hypoxic Brain Injury.

OBJECTIVES: To (1) describe characteristics of children with anoxic or hypoxic brain injuries (AnHBI) who presented to an inpatient rehabilitation unit, (2) explore functional outcomes of children with AnHBI at discharge, and (3) examine differences between children with AnHBI associated with cardiac arrest (CA) vs those with respiratory arrest (RA) only. DESIGN: Retrospective cohort study. SETTING: Pediatric inpatient rehabilitation hospital in the Northeast United States. PARTICIPANTS: A total of 46 children and adolescents ages 11 months to 18 years admitted to an inpatient rehabilitation brain injury unit (1994-2018) for a first inpatient admission after AnHBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Pediatric Cerebral Performance Category Scale (PCPC), Pediatric Overall Performance Category, and Functional Independence Measure for Children developmental functional quotients (WeeFIM DFQs) total and subscale scores. RESULTS: Most children had no disability before injury (PCPC=normal, n=37/46) and displayed significant functional impairments at admission to inpatient rehabilitation (PCPC=normal/mild, n=1/46). WeeFIM and PCPC scores improved significantly during inpatient rehabilitation (WeeFIM DFQ Total, P=.003; PCPC, P<.001), although many children continued to demonstrate significant impairments at discharge (PCPC=normal/mild, n=5/46). Functioning was better for the RA-only group relative to the CA group at admission (WeeFIM DFQ Total, P=.006) and discharge (WeeFIM DFQ Total, P<.001). Ongoing gains in functioning were noted 3 months after discharge compared with discharge (WeeFIM DFQ Cognitive, P=.008). CONCLUSIONS: In this group of children with AnHBI who received inpatient rehabilitation, functional status improves significantly between rehabilitation admission and discharge. By discharge, many children continued to display significant impairments, a minority of children had favorable neurologic outcomes, and children with CA have worse outcomes than those with RA-only. Given the small sample size, future research should examine functional recovery during inpatient rehabilitation in a larger, multisite cohort and include longer-term follow-up to examine recovery patterns over time.

Proceedings of the First Pediatric Coma and Disorders of Consciousness Symposium by the Curing Coma Campaign, Pediatric Neurocritical Care Research Group, and NINDS: Gearing for Success in Coma Advancements for Children and Neonates.

This proceedings article presents the scope of pediatric coma and disorders of consciousness based on presentations and discussions at the First Pediatric Disorders of Consciousness Care and Research symposium held on September 14th, 2021. Herein we review the current state of pediatric coma care and research opportunities as well as shared experiences from seasoned researchers and clinicians. Salient current challenges and opportunities in pediatric and neonatal coma care and research were identified through the contributions of the presenters, who were Jose I. Suarez, MD, Nina F. Schor, MD, PhD, Beth S. Slomine, PhD Erika Molteni, PhD, and Jan-Marino Ramirez, PhD, and moderated by Varina L. Boerwinkle, MD, with overview by Mark Wainwright, MD, and subsequent audience discussion. The program, executively planned by Varina L. Boerwinkle, MD, Mark Wainwright, MD, and Michelle Elena Schober, MD, drove the identification and development of priorities for the pediatric neurocritical care community.

Outcome Measurement in Children With a History of Disorders of Consciousness After Severe Brain Injury: Telephone Administration of the Vineland Adaptive Behavior Scales, Third Edition, and Glasgow Outcome Scale-Extended Pediatric Revision.

OBJECTIVES: Examine initial feasibility and utility of a battery of measures administered via telephone interview with a caregiver for describing long-term outcomes in individuals with a history of disorders of consciousness (DoC) after pediatric acquired brain injury (ABI). DESIGN: Cross-sectional. SETTING: Caregiver interview administered via telephone. PATIENTS: Convenience sample admitted to an inpatient pediatric neurorehabilitation unit with DoC after ABI at least 1 year prior to assessment (n = 41, 5-22 yr old at assessment). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The Vineland Adaptive Behavior Scales, Third Edition (Vineland-3), and Glasgow Outcome Scale-Extended Pediatric Revision (GOS-E Peds) were examined. Administration time of the Vineland-3 ranged from 13 to 101 minutes (m = 50) and the GOS-E Peds ranged from 2 to 10 minutes (m = 3). Vineland-3 Adaptive Behavior Composite (ABC) ranged from standard scores (SSs) of 20 (exceptionally low) to 100 (average) and GOS-E Peds scores ranged from 3 (i.e., upper moderate disability) to 7 (vegetative state). Lower adaptive functioning on the Vineland-3 ABC was strongly associated with greater disability on the GOS-E Peds (r = -0.805). On the Vineland-3 ABC, 19.5% earned the lowest possible score, whereas 12.2% obtained the lowest possible score for survivors on the GOS-E Peds; only 7.3% earned lowest scores on both measures. CONCLUSIONS: The Vineland-3 and GOS-E Peds were feasibly administered by telephone and were complementary in this cohort; the GOS-E provided a quick and easy measure of gross functional outcome, whereas the Vineland-3 took longer to administer but provided a greater level of detail about functioning. When both measures were used together, the range and variability of scores were maximized.

The role of the Neuropsychologist across the stages of recovery from acquired brain injury: a summary from the pediatric rehabilitation Neuropsychology collaborative.

Neuropsychologists working in a pediatric neurorehabilitation setting provide care for children and adolescents with acquired brain injuries (ABI) and play a vital role on the interdisciplinary treatment team. This role draws on influences from the field of clinical neuropsychology and its pediatric subspecialty, as well as rehabilitation psychology. This combination of specialties is uniquely suited for working with ABI across the continuum of recovery. ABI recovery often involves a changing picture that spans across stages of recovery (e.g., disorders of consciousness, confusional state, acute cognitive impairment), where each stage presents with distinctive characteristics that warrant a specific evidence-based approach. Assessment and intervention are used reciprocally to inform diagnostics, treatment, and academic planning, and to support patient and family adjustment. Neuropsychologists work with the interdisciplinary teams to collect and integrate data related to brain injury recovery and use this data for treatment planning and clinical decision making. These approaches must often be adapted and adjusted in real time as patients recover, demanding a dynamic expertise that is currently not supported through formal training curriculum or practice guidelines. This paper outlines the roles and responsibilities of pediatric rehabilitation neuropsychologists across the stages of ABI recovery with the goal of increasing awareness in order to continue to develop and formalize this role.

Inter-rater Reliability of the Revised Physical and Neurological Examination of Subtle Signs (PANESS) scored using video review.

The Physical and Neurological Examination of Subtle Signs (PANESS) is a brief neuromotor exam designed for use in children. This study examined the inter-rater reliability of PANESS scoring using video review in 23 typically developing youth, aged 10-18 years, who were either never-concussed or evaluated following clinical recovery from concussion. Moderate to excellent inter-rater reliability was identified across PANESS subscores and total score. The strongest inter-rater reliability was observed for the Timed Motor portion of the PANESS (ICCs >.90) suggesting that this section in particular may be a strong candidate for video-based scoring or telehealth administration.

A Core Outcome Measurement Set for Pediatric Critical Care.

OBJECTIVES: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. DESIGN: A modified Delphi consensus process. SETTING: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. SUBJECTS: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. CONCLUSIONS: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.