Pediatric Acute Respiratory Distress Syndrome Severity and Health-Related Quality of Life Outcomes: Single-Center Retrospective Cohort, 2011-2017.

OBJECTIVES: To determine factors associated with health-related quality of life (HRQL) decline among pediatric acute respiratory distress syndrome (PARDS) survivors. DESIGN: Retrospective cohort study. SETTING: Academic children's hospital. PATIENTS: Three hundred fifteen children 1 month to 18 years old with an unplanned PICU admission from December 2011 to February 2017 enrolled in the hospital's Outcomes Assessment Program. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Pre-admission baseline and median 6-week post-discharge HRQL were assessed using the Pediatric Quality of Life Inventory or the Functional Status II-R. Patients meeting retrospectively applied Second Pediatric Acute Lung Injury Consensus Conference criteria for PARDS were identified, and PARDS severity was classified using binary (mild/moderate, severe) and trichotomous (mild, moderate, severe) categorization for noninvasive ventilation and invasive mechanical ventilation (IMV). PARDS occurred in 41 of 315 children (13.0%). Clinically important HRQL decline (≥ 4.5 points) occurred in 17 of 41 patients (41.5%) with PARDS and 64 of 274 without PARDS (23.4%). On multivariable generalized linear regression adjusted for age, baseline Pediatric Overall Performance Category, maximum nonrespiratory Pediatric Logistic Organ Dysfunction score, diagnosis, length of stay, and time to follow-up, PARDS was associated with HRQL decline (adjusted relative risk [aRR], 1.70; 95% CI, 1.03-2.77). Four-hour and maximum PARDS severity were the only factors associated with HRQL decline. HRQL decline occurred in five of 18 patients with mild PARDS at 4 hours, five of 13 with moderate PARDS (aRR 2.35 vs. no PARDS [95% CI, 1.01-5.50]), and seven of ten with severe PARDS (aRR 2.56 vs. no PARDS [95% CI, 1.45-4.53]). The area under the receiver operating characteristic curve for discrimination of HRQL decline for IMV patients was 0.79 (95% CI, 0.66-0.91) for binary and 0.80 (95% CI, 0.69-0.93) for trichotomous severity categorization. CONCLUSIONS: HRQL decline is common among children surviving PARDS, and risk of decline is associated with PARDS severity. HRQL decline from baseline may be an efficient and clinically meaningful endpoint to incorporate into PARDS clinical trials.

Risk Factors for Positive Post-Traumatic Stress Disorder Screening and Associated Outcomes in Children Surviving Acute Respiratory Failure: A Secondary Analysis of the Randomized Evaluation of Sedation Titration for Respiratory Failure Clinical Trial.

OBJECTIVES: To identify risk factors and outcomes associated with a positive post-traumatic stress disorder (PTSD) screen following pediatric acute respiratory failure treated with invasive mechanical ventilation. DESIGN: Nonprespecified secondary analysis of a randomized clinical trial. SETTING: Thirty-one U.S. PICUs. PATIENTS: Children in the Randomized Evaluation of Sedation Titration for Respiratory Failure (RESTORE) trial (NCT00814099, ClinicalTrials.gov ) over 8 years old who completed PTSD screening 6 months after discharge. INTERVENTIONS: RESTORE sites were randomized to a targeted, nurse-directed sedation strategy versus usual care. MEASUREMENTS AND MAIN RESULTS: PTSD screening was completed by 102 subjects using the Child Post-Traumatic Stress Disorder Symptom Scale; a score of greater than or equal to 11 was considered screening positive for PTSD. Cognitive status was categorized using Pediatric Cerebral Performance Category; health-related quality of life (HRQL) was evaluated using child-reported Pediatric Quality of Life Inventory, Version 4.0. Thirty-one children (30%) screened positive for PTSD. Children with a positive screen endorsed symptoms in all categories: reexperiencing, avoidance, and hyperarousal. Most endorsed that symptoms interfered with schoolwork ( n = 18, 58%) and happiness ( n = 17, 55%). Screening positive was not associated with RESTORE treatment group. In a multivariable logistic model adjusting for age, sex, and treatment group, screening positive was independently associated with lower median income in the family's residential zip code (compared with income ≥ $80,000; income < $40,000 odds ratio [OR], 32.8; 95% CI, 2.3-458.1 and $40,000-$79,999 OR, 15.6; 95% CI, 1.3-182.8), renal dysfunction (OR 5.3, 95% CI 1.7-16.7), and clinically significant pain in the PICU (OR, 8.3; 95% CI, 1.9-35.7). Children with a positive screen experienced decline in cognitive function and impaired HRQL more frequently than children with a negative screen. CONCLUSIONS: Screening positive for PTSD is common among children following acute respiratory failure and is associated with lower HRQL and decline in cognitive function. Routine PTSD screening may be warranted to optimize recovery.

Family Presence at the PICU Bedside: A Single-Center Retrospective Cohort Study.

OBJECTIVES: To determine factors associated with bedside family presence in the PICU and to understand how individual factors interact as barriers to family presence. DESIGN: Mixed methods study. SETTING: Tertiary children's hospital PICU. SUBJECTS: Five hundred twenty-three children of less than 18 years enrolled in the Seattle Children's Hospital Outcomes Assessment Program from 2011 to 2017. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Quantitative: Family was documented every 2 hours. Exposures included patient and illness characteristics and family demographic and socioeconomic characteristics. We used multivariable logistic regression to identify factors associated with presence of less than 80% and stratified results by self-reported race. Longer PICU length of stay (LOS), public insurance, and complex chronic conditions (C-CD) were associated with family presence of less than 80%. Self-reported race modified these associations; no factors were associated with lower bedside presence for White families, in contrast with multiple associations for non-White families including public insurance, C-CD, and longer LOS. Qualitative: Thematic analysis of social work notes for the 48 patients with family presence of less than 80% matched on age, LOS, and diagnosis to 48 patients with greater than or equal to 95% family presence. Three themes emerged: the primary caregiver's prior experiences with the hospital, relationships outside of the hospital, and additional stressors during the hospitalization affected bedside presence. CONCLUSIONS: We identified sociodemographic and illness factors associated with family bedside presence in the PICU. Self-reported race modified these associations, representing racism within healthcare. Family presence at the bedside may help identify families facing greater disparities in healthcare access.

Experiences of Alaska Native people living with burn injury and opportunities for health system strengthening.

BACKGROUND: Injuries are a leading cause of death and disability for Alaska Native (AN) people. Alaska Native Tribal Health Consortium (ANTHC) is supporting the development of a burn care system that includes a partnership between Alaska Native Medical Center (ANMC) in Anchorage, AK and UW Medicine Regional Burn Center at Harborview Medical Center (HMC) in Seattle, WA. We aimed to better understand the experiences of AN people with burn injuries across the care continuum to aid development of culturally appropriate care regionalization. METHODS: We performed focus groups with twelve AN people with burn injury and their caregivers. A multidisciplinary team of burn care providers, qualitative research experts, AN care coordinator, and AN cultural liaison led focus groups to elicit experiences across the burn care continuum. Transcripts were analyzed using a phenomenological approach and inductive coding to understand how AN people and families navigated the medical and community systems for burn care and areas for improvement. RESULTS: Three themes were identified: 1-Challenges with local burn care in remote communities including limited first aid, triage, pain management, and wound care, as well as long-distance transport to definitive care; 2-Divergence between cultural values and medical practices that generated mistrust in the medical system, isolation from their support systems, and recovery goals that were not aligned with their needs; 3-Difficulty accessing emotional health support and a survivor community that could empower their resilience. CONCLUSION: Participants reported modifiable barriers to culturally competent treatment for burn injuries among AN people. The findings can inform initiatives that leverage existing resources, including expansion of the Extension for Community Healthcare Outcomes (ECHO) telementoring program, promulgation of the Phoenix Society Survivors Offering Assistance in Recovery (SOAR) to AK, coordination of regionalized care to reduce time away from AK and provide more comfortable community reintegration, and define rehabilitation goals in terms that align with personal goals and subsistence lifestyle skills. Long-distance transport times are non-modifiable, but better pre-hospital care could be achieved by harnessing existing telehealth services and adapting principles of prolonged field care to allow for triage, initial care, and resuscitation in remote environments.

Components of Health-Related Quality of Life Most Affected Following Pediatric Critical Illness.

OBJECTIVES: To evaluate which individual elements of health-related quality of life contribute most to decline in overall health-related quality of life status following pediatric critical care. DESIGN: Retrospective cohort study. SETTING: Seattle Children's Hospital. PATIENTS: ICU patients age 1 month to 18 years admitted between December 2011 and February 2017. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We assessed health-relatedquality of life decline from baseline to postdischarge (median, 6 wk) and determined the individual items of the Pediatric Quality of Life Inventory Infant Scales (< 2 yr) and Generic Core Scales (2-18 yr) with the highest prevalence of decline. We used multivariable regression to estimate the risk of decline in each of seven thematic categories by patient age, baseline health status, diagnosis, Pediatric Risk of Mortality score, and ICU length of stay. Decline from baseline health-related quality of life occurred in 22.5% of 539 patients. Items most commonly affected for infants less than 2 years were primarily emotional (cranky/crying, sleep, and self-soothing). Children 2-18 years most commonly experienced declines in physical functioning (play/exercise, lifting, and pain). Across the entire cohort, declines in categories of energy (31.5%), activity (31.0%), sleep (28.0%), and fear (24.7%) were most commonly endorsed. Risk of decline in each category varied with patient age, medical complexity, and diagnosis. CONCLUSIONS: Deconditioning, sleep, fear, and pain are important targets for intervention to improve health-related quality of life outcomes for critically ill children.

Health-Related Quality of Life Following Delirium in the PICU.

OBJECTIVES: To evaluate whether delirium during pediatric critical illness is associated with post-discharge health-related quality of life. DESIGN: Retrospective cohort study. SETTING: Academic tertiary care center. PATIENTS: Children 1 month to 18 years old admitted to the PICU or cardiac ICU and enrolled in the Seattle Children's Hospital Outcomes Assessment Program. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Delirium was assessed twice daily using the Cornell Assessment of Pediatric Delirium; a score greater than or equal to 9 (with fluctuating level of arousal for children with developmental disability) indicated delirium. Baseline (pre-admission) and post-discharge health-related quality of life were assessed by the Pediatric Quality of Life Inventory (Mapi Research Trust, Lyon, France) or the Functional Status II-R (for children with developmental disability). Among 534 patients, delirium was common (44%), as was clinically important decline in health-related quality of life (≥ 4.5 points) from baseline to follow-up (22%), measured at median 6.6 weeks post-hospital discharge (interquartile range, 5.1-8.5). On univariate analysis, children with delirium had similar likelihood of health-related quality of life decline compared with those without (25.5% vs 19.7%; p = 0.1). Using multivariable logistic regression adjusting for age, medical complexity, predicted risk of mortality, admission diagnosis, receipt of noninvasive ventilation, hospital length of stay, time to follow-up, and parent age, delirium was independently associated with health-related quality of life decline among children assessed by the Pediatric Quality of Life Inventory (adjusted odds ratio, 2.0; 95% CI, 1.1-3.5). Among children evaluated with the Functional Status II-R, delirium was not independently associated with health-related quality of life decline (odds ratio, 1.4; 95% CI, 0.6-3.2). In both groups, longer time to follow-up was also independently associated with improvements in health-related quality of life. CONCLUSIONS: Delirium during the ICU stay is associated with decline in health-related quality of life from baseline to post-discharge follow-up among children assessed by the Pediatric Quality of Life Inventory, who were generally characterized by normal baseline cognitive function and less medical comorbidity. This association was not present among children assessed by the Functional Status II-R, potentially due to their higher overall risk of health-related quality of life decline, or other clinical differences that modify the effects of delirium in this group.

The association of severe pain experienced in the pediatric intensive care unit and postdischarge health-related quality of life: A retrospective cohort study.

BACKGROUND: Pain may be a modifiable risk factor for lower health-related quality of life after pediatric critical illness. AIM: To evaluate the association between severe pain experienced in the (pediatrc intensive care unit) and postdischarge health-related quality of life. METHODS: This was a retrospective cohort study. Children aged 1 month to 18 years admitted to the pediatric intensive care unit and enrolled in the Seattle Children's Hospital Outcomes Assessment Program were included. Pain was assessed every 2 h by bedside nursing staff using a behavioral pain scale or numeric pain scale. A day of severe pain was defined as a pediatric intensive care unit day with ≥25% of pain scores ≥7/10. Baseline (preadmission) and postdischarge (median 6 weeks) health-related quality of life was assessed by the Pediatric Quality of Life Inventory (PedsQL™) or the Stein Jessop Functional Status II-R (FS II-R, for children with developmental disability). The cohort was stratified by diagnosis category (surgical vs. medical), and associations were measured using linear regression models. RESULTS: Among 546 patients, 11.9% experienced ≥1 day of severe pain. In multivariable linear regression, each day of severe pain was independently associated with a lower postdischarge health-related quality of life score by 3.6 points (95% CI -6.3 to -0.9) adjusted for baseline health-related quality of life score, age, baseline cognitive function, days with multi-organ dysfunction, pediatric intensive care unit length of stay, and decline in overall function. This association was stronger among surgical patients than medical patients with each day of severe pain resulting in a lower postdischarge health-related quality of life score by 5.3 points (95% CI -9.6 to -0.9) versus 2.6 points (95% CI -5.8 to 0.6). Surgical patients had lower postdischarge emotional functioning than physical functioning subdomain scores. CONCLUSIONS: Children who experience severe pain in the pediatric intensive care unit have lower postdischarge health-related quality of life adjusting for baseline health-related quality of life, particularly among children who have undergone surgery. Attention to pain management may be important to improve postdischarge health-related quality of life.

The Impact of Rapid Exome Sequencing on Medical Management of Critically Ill Children.

OBJECTIVES: To evaluate the clinical usefulness of rapid exome sequencing (rES) in critically ill children with likely genetic disease using a standardized process at a single institution. To provide evidence that rES with should become standard of care for this patient population. STUDY DESIGN: We implemented a process to provide clinical-grade rES to eligible children at a single institution. Eligibility included (a) recommendation of rES by a consulting geneticist, (b) monogenic disorder suspected, (c) rapid diagnosis predicted to affect inpatient management, (d) pretest counseling provided by an appropriate provider, and (e) unanimous approval by a committee of 4 geneticists. Trio exome sequencing was sent to a reference laboratory that provided verbal report within 7-10 days. Clinical outcomes related to rES were prospectively collected. Input from geneticists, genetic counselors, pathologists, neonatologists, and critical care pediatricians was collected to identify changes in management related to rES. RESULTS: There were 54 patients who were eligible for rES over a 34-month study period. Of these patients, 46 underwent rES, 24 of whom (52%) had at least 1 change in management related to rES. In 20 patients (43%), a molecular diagnosis was achieved, demonstrating that nondiagnostic exomes could change medical management in some cases. Overall, 84% of patients were under 1 month old at rES request and the mean turnaround time was 9 days. CONCLUSIONS: rES testing has a significant impact on the management of critically ill children with suspected monogenic disease and should be considered standard of care for tertiary institutions who can provide coordinated genetics expertise.

The Neglected Price of Pediatric Acute Kidney Injury: Non-renal Implications.

Preclinical models and emerging translational data suggest that acute kidney injury (AKI) has far reaching effects on all other major organ systems in the body. Common in critically ill children and adults, AKI is independently associated with worse short and long term morbidity, as well as mortality, in these vulnerable populations. Evidence exists in adult populations regarding the impact AKI has on life course. Recently, non-renal organ effects of AKI have been highlighted in pediatric AKI survivors. Given the unique pediatric considerations related to somatic growth and neurodevelopmental consequences, pediatric AKI has the potential to fundamentally alter life course outcomes. In this article, we highlight the challenging and complex interplay between AKI and the brain, heart, lungs, immune system, growth, functional status, and longitudinal outcomes. Specifically, we discuss the biologic basis for how AKI may contribute to neurologic injury and neurodevelopment, cardiac dysfunction, acute lung injury, immunoparalysis and increased risk of infections, diminished somatic growth, worsened functional status and health related quality of life, and finally the impact on young adult health and life course outcomes.

Physician recommended school accommodations and student outcomes following a mild traumatic brain injury among youth with persistent post-concussive symptoms.

BACKGROUND: Post-concussion return-to-learn (RTL) guidelines include implementation of school accommodations. Yet, little is known about physician recommendations for school accommodations and their impact, particularly among youth experiencing persistent post-concussive symptoms (PPCS). OBJECTIVE: We examined the association between physician recommended school accommodations and student outcomes among youth experiencing PPCS. METHODS: Data from a randomized comparative effectiveness trial was used. Physician recommended school accommodations (≤90 days post-injury) were collected via chart abstraction. Grade point average was extracted from school records. Reports of problems at school, concussion symptoms, health-related quality of life (HRQOL), anxiety symptoms, and depressive symptoms were collected by survey (at baseline, three months, and 12 months post study entry). RESULTS: Of 200 participants (Mage = 14.7, 62% female), 86% were recommended school accommodations. Number of recommended school accommodations was positively associated with number of school problems at three months (aRR 1.18, 95% CI:1.12-1.24) and 12 months (aRR 1.11, 95% CI:1.05-1.18). No significant associations were found between recommended school accommodations and GPA, HRQOL, anxiety symptoms, or depressive symptoms. CONCLUSIONS: Physicians recommend more school accommodations for students experiencing more school problems post-concussion. Appropriate implementation of RTL recommendations made by physicians by fostering partnerships among physicians, students, and schools may be needed to achieve student-centered RTL.