Accuracy of Early Neuroprognostication in Pediatric Severe Traumatic Brain Injury.

BACKGROUND: Children with severe traumatic brain injury (sTBI) are at risk for neurological sequelae impacting function. Clinicians are tasked with neuroprognostication to assist in decision-making. We describe a single-center study assessing clinicians' neuroprognostication accuracy. METHODS: Clinicians of various specialties caring for children with sTBI were asked to predict their patients' functioning three to six months postinjury. Clinicians were asked to participate in the study if their patient had survived but not returned to baseline between day 4 and 7 postinjury. The outcome tool utilized was the functional status scale (FSS), ranging from 6 to 30 (best-worst function). Predicted scores were compared with actual scores three to six months postinjury. Lin concordance correlation coefficients were used to estimate agreement between predicted and actual FSS. Outcome was dichotomized as good (FSS 6 to 8) or poor (FSS ≥9). Positive and negative predictive values for poor outcome were calculated. Pessimistic prognostic prediction was defined as predicted worse outcome by ≥3 FSS points. Demographic and clinical variables were collected. RESULTS: A total of 107 surveys were collected on 24 patients. Two children died. Fifteen children had complete (FSS = 6) or near-complete (FSS = 7) recovery. Mean predicted and actual FSS scores were 10.8 (S.D. 5.6) and 8.6 (S.D. 4.1), respectively. Predicted FSS scores were higher than actual scores (P < 0.001). Eight children had collective pessimistic prognostic prediction. CONCLUSIONS: Clinicians predicted worse functional outcomes, despite high percentage of patients with near-normal function at follow-up clinic. Certain patient and provider factors were noted to impact accuracy and need to be studied in larger cohorts.

Intrathecal Dexamethasone in Febrile Infection-Related Epilepsy Syndrome: A Case Report.

Objectives: Febrile infection-related epilepsy syndrome (FIRES) is characterized by explosive onset refractory status epilepticus (RSE) in healthy individuals that is refractory to antiseizure medication (ASM), continuous anesthetic infusions (CIs), and immunomodulators. Recently, a case series of patients receiving intrathecal dexamethasone (IT-DEX) was reported with improved RSE control. Methods: We present a child with FIRES with favorable outcome after receiving concomitant anakinra and IT-DaEX. A 9-year-old male patient presented with encephalopathy following a febrile illness. He developed seizures evolving to RSE refractory to multiple ASM, 3 CIs, steroids, IVIG, plasmapheresis, ketogenic diet (KD), and anakinra. After continued seizures and inability to wean off CI, IT-DEX was initiated. Results: He received 6 doses of IT-DEX with resolution of RSE, rapid wean off CI, and improved inflammatory markers. At discharge, he was ambulating with assistance, speaking 2 languages, and ingesting food orally. Discussion: FIRES is a neurologically devastating syndrome with high mortality and morbidity. Proposed guidelines and various treatment strategies are becoming available in the literature. Although treatment with KD, anakinra, and tocilizumab has been successful in previous FIRES cases, our results suggest that the addition of IT-DEX may allow for faster weaning off CI and better cognitive outcomes when initiated early in the course.

Parent Physical Activity: A Systematic Review of the Literature and Recommendations for Parents of Children With Autism Spectrum Disorder.

BACKGROUND: The aims of this review were to describe exercise interventions, facilitators, and barriers to physical activity for parents of children with autism spectrum disorder. METHODS: A systematic review of the literature, appraising the validity of each article with Melnyk and Fineout-Overholt's level of evidence, from different databases CINAHL, Cochrane, PsycINFO, PubMed, ProQuest, and Web of Science between 2000 and 2020 was conducted. As the initial search revealed no articles on exercise interventions and only 2 articles with children with autism spectrum disorder, the aim was widened to all parents of children. RESULTS: Forty-five articles were identified on barriers to physical activity including being the primary caregiving parent, perception of guilt and selfishness, and adhering to exercise programs they do as part of research, once research ends. Facilitators for physical activity including parents being more likely to exercise if they can bring their child with them and parents preferring exercise that is a lifelong habit, such as walking. CONCLUSIONS: Due to the lack of research on parents of children with autism spectrum disorder, recommendations include development and testing of interventions for parents of children with this condition including family-based exercise interventions where children and parents have a choice to exercise together.

Complementary and Alternative Medicine Mind-Body Approaches Used Among Racially and Ethnically Diverse Adolescents.

PURPOSE: The aim of this paper is to examine complementary and alternative medicine (CAM) use among racially and ethnically diverse adolescents. Greater understanding of CAM use among this group is warranted to better inform health care providers in delivering a culturally relevant health promotion approach. DESIGN AND METHODS: A secondary data analysis was conducted using the 2012 Child Complementary and Alternative Medicine Supplement of the National Health Interview Survey (CAM-NHIS) data, which was collected from a national sample of adolescents aged 12-17 years. A logistic regression test was employed to investigate the predictors associated with CAM use among racially and ethnically diverse adolescents. RESULTS: While Black and Hispanic adolescents were the least likely to use CAM compared to their White counterparts, families with higher incomes, higher education attainment, and adolescents who experienced pain were more likely to use CAM. CONCLUSIONS: Findings suggest the need for future research to gain a greater understanding of CAM use among racially and ethnically diverse adolescents, and insights into how health disparities impact CAM use. Greater understanding of how CAM use intersects with health beliefs and outcomes is also warranted. PRACTICE IMPLICATIONS: Based on the CAM-NHIS survey, few racially and ethnically diverse adolescents have reported use of CAM. Development of culturally appropriate instruments and methods to assess CAM use among racially and ethnically diverse adolescents may yield specific data for this population. Informed health care providers can advocate for improved access to CAM for minority adolescents and alter disparate use.

Parental perception of FIRES outcomes, emotional states, and social media usage.

OBJECTIVE: To investigate parental perception of FIRES outcomes, assess emotional states and related social media usage. METHODS: A survey-based study of parents of children with FIRES participating in a FIRES-specific Facebook group was performed. The survey collected information on medical aspects of their child's course in the acute, subacute, and chronic periods, emotional states, and social media usage. Child outcome was assessed utilizing the pediatric extended Glasgow outcome scale (GOS-E). Parental emotional states were assessed utilizing the Depression, Anxiety and Stress Scale (DASS). Descriptive statistics were performed. Associations were described using the Spearman rank correlation. Open-ended questions were included. Thematic analysis was performed. RESULTS: Twenty-nine surveys were analyzed. All children were in the chronic phase at time of survey response, except for two who died. Mothers answered 22 surveys, and fathers answered seven. Median age at FIRES presentation was 5.6 years [IQR 4.2-8.95], with a median number of 3 seizures per week [IQR 0-10, range 0-50], 4 daily anti-seizure medicines [IQR 3-5], and chronic GOS-E of 6 [IQR 2-8 range 2-8]. Most parents reported none to mild levels of depression, anxiety, and stress. Higher seizure burden positively correlated with parental depression symptoms (r = .41 (95% CI 0.01, 0.70), P = .045). Most parents found social media helpful with coping and 96% desired FIRES research advertised. Twenty-five parents shared their recommendations to fellow parents and the medical team in an open-ended format. Themes included support, expertise, and medical advice. SIGNIFICANCE: Despite their children's significantly impaired functional outcome after FIRES and high rates of medically refractory epilepsy, the cohort demonstrated remarkable emotional resilience. They perceive social media as beneficial, are interested in social media-advertised research, and share valuable advice. Social media may serve as an introductory platform to enhance the physician-scientist-parent/patient relationship.

Social and Psychological Factors Associated With Health Care Transition for Young Adults Living With Sickle Cell Disease.

Introduction: Due to advances in disease management, mortality rates in children with sickle cell disease (SCD) have decreased. However, mortality rates for young adults (YA) increased, and understanding of social and psychological factors is critical. The aim of this study was to explore factors associated with health care transition experiences for YA with SCD. Method: This was a qualitative descriptive study. A 45-minute semistructured interview was conducted with 13 YA (M = 21.5 years, SD = 1.73). Results: Results suggest that social and psychological factors and self-management experiences influence health care transition. Eight themes emerged: "need for accessible support"; "early assistance with goal setting"; "incongruence among expectations, experiences, and preparation"; "spiritual distress"; "stigma"; "need for collaboration"; "appreciation for caring providers"; and "feeling isolated." Discussion: Consideration of cultural contexts will guide nurses in supporting health care transition. Designing culturally relevant interventions that address unique needs for YA living with SCD is warranted.