Parents' Experiences Caring for a Child after a Critical Illness: A Qualitative Study.

Objectives This article described parents' experience and identifies outcomes important to parents following their child's critical illness. Methods Semistructured interviews with 22 female and 4 male parents representing 26 critically ill children with predominately neurologic and respiratory diagnoses. Most children were younger than 5 years at discharge with a median (interquartile range) of 2 (2.0-3.0) years from discharge to interview. Results Many children returned home with life-altering physical and cognitive disabilities requiring months to years of rehabilitation. Parents remembered feeling unprepared and facing an intense, chaotic time when the child first returned home. They described how they suddenly had to center their daily activities around the child's needs amidst competing needs of siblings and partners, and in some cases, the medicalization of the home. They recounted negotiating adjustments almost daily with insurance agencies, medical doctors and therapists, employers, the child, and other family members to keep the family functioning. In the long term, families developed a new norm, choosing to focus on what the child could still do rather than what they could not. Even if the child returned to baseline, parents remembered the adjustments made to keep the child alive and the family functioning. Conclusion Heightened awareness of family experiences after pediatric critical illness will allow health care providers to improve family preparedness for the transition from hospital to home.

Design and rationale of the Post-Intensive Care Syndrome - paediatrics (PICS-p) Longitudinal Cohort Study.

INTRODUCTION: As paediatric intensive care unit (PICU) mortality declines, there is growing recognition of the morbidity experienced by children surviving critical illness and their families. A comprehensive understanding of the adverse physical, cognitive, emotional and social sequelae common to PICU survivors is limited, however, and the trajectory of recovery and risk factors for morbidity remain unknown. METHODS AND ANALYSIS: The Post-Intensive Care Syndrome - paediatrics Longitudinal Cohort Study will evaluate child and family outcomes over 2 years following PICU discharge and identify child and clinical factors associated with impaired outcomes. We will enrol 750 children from 30 US PICUs during their first PICU hospitalisation, including 500 case participants experiencing ≥3 days of intensive care that include critical care therapies (eg, mechanical ventilation, vasoactive infusions) and 250 age-matched, sex-matched and medical complexity-matched control participants experiencing a single night in the PICU with no intensive care therapies. Children, parents and siblings will complete surveys about health-related quality of life, physical function, cognitive status, emotional health and peer and family relationships at multiple time points from baseline recall through 2 years post-PICU discharge. We will compare outcomes and recovery trajectories of case participants to control participants, identify risk factors associated with poor outcomes and determine the emotional and social health consequences of paediatric critical illness on parents and siblings. ETHICS AND DISSEMINATION: This study has received ethical approval from the University of Pennsylvania Institutional Review Board (protocol #843844). Our overall objective is to characterise the ongoing impact of paediatric critical illness to guide development of interventions that optimise outcomes among children surviving critical illness and their families. Findings will be presented at key disciplinary meetings and in peer-reviewed publications at fixed data points. Published manuscripts will be added to our public study website to ensure findings are available to families, clinicians and researchers. TRIALS REGISTRATION NUMBER: NCT04967365.

Child Opportunity Index and Pediatric Intensive Care Outcomes: A Multicenter Retrospective Study in the United States.

OBJECTIVES: To evaluate for associations between a child's neighborhood, as categorized by Child Opportunity Index (COI 2.0), and 1) PICU mortality, 2) severity of illness at PICU admission, and 3) PICU length of stay (LOS). DESIGN: Retrospective cohort study. SETTING: Fifteen PICUs in the United States. PATIENTS: Children younger than 18 years admitted from 2019 to 2020, excluding those after cardiac procedures. Nationally-normed COI category (very low, low, moderate, high, very high) was determined for each admission by census tract, and clinical features were obtained from the Virtual Pediatric Systems LLC (Los Angeles, CA) data from each site. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Among 33,901 index PICU admissions during the time period, median patient age was 4.9 years and PICU mortality was 2.1%. There was a higher percentage of admissions from the very low COI category (27.3%) than other COI categories (17.2-19.5%, p < 0.0001). Patient admissions from the high and very high COI categories had a lower median Pediatric Index of Mortality 3 risk of mortality (0.70) than those from the very low, low, and moderate COI groups (0.71) ( p < 0.001). PICU mortality was lowest in the very high (1.7%) and high (1.9%) COI groups and highest in the moderate group (2.5%), followed by very low (2.3%) and low (2.2%) ( p = 0.001 across categories). Median PICU LOS was between 1.37 and 1.50 days in all COI categories. Multivariable regression revealed adjusted odds of PICU mortality of 1.30 (95% CI, 0.94-1.79; p = 0.11) for children from a very low versus very high COI neighborhood, with an odds ratio [OR] of 0.996 (95% CI, 0.993-1.00; p = 0.05) for mortality for COI as an ordinal value from 0 to 100. Children without insurance coverage had an OR for mortality of 3.58 (95% CI, 2.46-5.20; p < 0.0001) as compared with those with commercial insurance. CONCLUSIONS: Children admitted to a cohort of U.S. PICUs were often from very low COI neighborhoods. Children from very high COI neighborhoods had the lowest risk of mortality and observed mortality; however, odds of mortality were not statistically different by COI category in a multivariable model. Children without insurance coverage had significantly higher odds of PICU mortality regardless of neighborhood.

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.

Readmission Rates After Acute Respiratory Distress Syndrome in Children.

Importance: An increasing number of children survive after acute respiratory distress syndrome (ARDS). The long-term morbidity affecting these survivors, including the burden of hospital readmission and key factors associated with readmission, is unknown. Objective: To determine 1-year readmission rates among survivors of pediatric ARDS and to investigate the associations of 3 key index hospitalization factors (presence or development of a complex chronic condition, receipt of a tracheostomy, and hospital length of stay [LOS]) with readmission. Design, Setting, and Participants: This retrospective cohort study used data from the commercial or Medicaid IBM MarketScan databases between 2013 and 2017, with follow-up data through 2018. Participants included hospitalized children (aged ≥28 days to <18 years) who received mechanical ventilation and had algorithm-identified ARDS. Data analysis was completed from March 2022 to March 2023. Exposures: Complex chronic conditions (none, nonrespiratory, and respiratory), receipt of tracheostomy, and index hospital LOS. Main Outcomes and Measures: The primary outcome was 1-year, all-cause hospital readmission. Univariable and multivariable Cox proportional hazard models were created to test the association of key hospitalization factors with readmission. Results: One-year readmission occurred in 3748 of 13 505 children (median [IQR] age, 4 [0-14] years; 7869 boys [58.3%]) with mechanically ventilated ARDS who survived to hospital discharge. In survival analysis, the probability of 1-year readmission was 30.0% (95% CI, 29.0%-30.8%). One-half of readmissions occurred within 61 days of discharge (95% CI, 56-67 days). Both respiratory (adjusted hazard ratio [aHR], 2.69; 95% CI, 2.42-2.98) and nonrespiratory (aHR, 1.86; 95% CI, 1.71-2.03) complex chronic conditions were associated with 1-year readmission. Placement of a new tracheostomy (aHR, 1.98; 95% CI, 1.69-2.33) and LOS 14 days or longer (aHR, 1.87; 95% CI, 1.62-2.16) were associated with readmission. After exclusion of children with chronic conditions, LOS 14 days or longer continued to be associated with readmission (aHR, 1.92; 95% CI, 1.49-2.47). Conclusions and Relevance: In this retrospective cohort study of children with ARDS who survived to discharge, important factors associated with readmission included the presence or development of chronic medical conditions during the index admission, tracheostomy placement during index admission, and index hospitalization of 14 days or longer. Future studies should evaluate whether postdischarge interventions (eg, telephonic contact, follow-up clinics, and home health care) may help reduce the readmission burden.

Pediatric Sepsis Requiring Intensive Care Admission: Potential Structured Follow-Up Protocols to Identify and Manage New or Exacerbated Medical Conditions.

Pediatric sepsis is a leading cause of morbidity and mortality in children globally. Children who require the pediatric intensive care unit (PICU) are at high risk for new or worsening co-morbidities, as well as readmission. This review describes the current state of protocolized follow-up after pediatric sepsis requiring PICU admission. We searched Medline and EMBASE databases for studies published in English from 2005 to date. Duplicates, review articles, abstracts and poster presentations were excluded; neonatal intensive care unit (NICU) patients were also excluded since neonatal sepsis is variably defined and differs from the pediatric consensus definition. The search yielded 418 studies of which 55 were duplicates; the subsequent 363 studies were screened for inclusion criteria, yielding 31 studies for which full article screening was completed. Subsequently, 23 studies were excluded due to wrong population (9), wrong publication type (10), duplicate data (3) or wrong outcome (1). In total, nine studies were included for which we described study design, setting, population, sample size, outcomes, PICU core outcome domain, and results. There were 4 retrospective cohort studies, 4 prospective cohort studies, 1 retrospective case series and no prospective trials. These studies show the varying trajectories of recovery after discharge, with the common finding that new or worsening morbidities are worse within months of discharge, but may persist. Sepsis survivors may have distinct needs and a different post-PICU trajectory compared to other critically ill children, particularly in quality of life and neurocognitive outcomes. Future research should focus on developing screening protocols and studying protocolized follow-up trials to reduce morbidity after pediatric sepsis.

Transcriptomic profiles of multiple organ dysfunction syndrome phenotypes in pediatric critical influenza.

Background: Influenza virus is responsible for a large global burden of disease, especially in children. Multiple Organ Dysfunction Syndrome (MODS) is a life-threatening and fatal complication of severe influenza infection. Methods: We measured RNA expression of 469 biologically plausible candidate genes in children admitted to North American pediatric intensive care units with severe influenza virus infection with and without MODS. Whole blood samples from 191 influenza-infected children (median age 6.4 years, IQR: 2.2, 11) were collected a median of 27 hours following admission; for 45 children a second blood sample was collected approximately seven days later. Extracted RNA was hybridized to NanoString mRNA probes, counts normalized, and analyzed using linear models controlling for age and bacterial co-infections (FDR q<0.05). Results: Comparing pediatric samples collected near admission, children with Prolonged MODS for ≥7 days (n=38; 9 deaths) had significant upregulation of nine mRNA transcripts associated with neutrophil degranulation (RETN, TCN1, OLFM4, MMP8, LCN2, BPI, LTF, S100A12, GUSB) compared to those who recovered more rapidly from MODS (n=27). These neutrophil transcripts present in early samples predicted Prolonged MODS or death when compared to patients who recovered, however in paired longitudinal samples, they were not differentially expressed over time. Instead, five genes involved in protein metabolism and/or adaptive immunity signaling pathways (RPL3, MRPL3, HLA-DMB, EEF1G, CD8A) were associated with MODS recovery within a week. Conclusion: Thus, early increased expression of neutrophil degranulation genes indicated worse clinical outcomes in children with influenza infection, consistent with reports in adult cohorts with influenza, sepsis, and acute respiratory distress syndrome.

Parental Perception and Measured Functional Status Following Pediatric Critical Illness: A Secondary Analysis of the Survivor Outcomes Study.

OBJECTIVES: We evaluated the concordance between parent/guardian perception of child long-term function and objectively scored long-term functional status using the Functional Status Scale (FSS) among PICU survivors. DESIGN: Secondary analysis of prospective cohort study. SETTING: Urban, tertiary, academic PICU. PATIENTS: PICU patients less than 18 years old were admitted between June and August 2012. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We conducted telephone interviews of parents/guardians of PICU survivors ( n = 77) 6 months post-PICU discharge. We asked parents/guardians to characterize their child's functional status, and we determined FSS scores using scripted interview questions. Concordance between parent/guardian perceptions and FSS scores was assessed, revealing that parent/guardian perceptions of their child's functional status aligned poorly with FSS scores at 6 months (kappa coefficient 0.16). CONCLUSIONS: These findings shed light on a critical disconnect between parent/guardian perspective and our current tools to measure a child's functional status following critical illness. In an era of decreased PICU mortality and increased long-term morbidity, the discordance between parent/guardian perception and available scoring tools in the assessment of long-term functional status highlights a key opportunity to improve communication and anchor expectations for long-term outcomes among PICU survivors.

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.

Measuring Social Health Following Pediatric Critical Illness: A Scoping Review and Conceptual Framework.

OBJECTIVE: Social health is an important component of recovery following critical illness as modeled in the pediatric Post-Intensive Care Syndrome framework. We conducted a scoping review of studies measuring social outcomes (measurable components of social health) following pediatric critical illness and propose a conceptual framework of the social outcomes measured in these studies. DATA SOURCES: PubMed, EMBASE, PsycINFO, CINAHL, and the Cochrane Registry. STUDY SELECTION: We identified studies evaluating social outcomes in pediatric intensive care unit (PICU) survivors or their families from 1970-2017 as part of a broader scoping review of outcomes after pediatric critical illness. DATA EXTRACTION: We identified articles by dual review and dual-extracted study characteristics, instruments, and instrument validation and administration information. For instruments used in studies evaluating a social outcome, we collected instrument content and described it using qualitative methods adapted to a scoping review. DATA SYNTHESIS: Of 407 articles identified in the scoping review, 223 (55%) evaluated a social outcome. The majority were conducted in North America and the United Kingdom, with wide variation in methodology and population. Among these studies, 38 unique instruments were used to evaluate a social outcome. Specific social outcomes measured included individual (independence, attachment, empathy, social behaviors, social cognition, and social interest), environmental (community perceptions and environment), and network (activities and relationships) characteristics, together with school and family outcomes. While many instruments assessed more than one social outcome, no instrument evaluated all areas of social outcome. CONCLUSIONS: The full range of social outcomes reported following pediatric critical illness were not captured by any single instrument. The lack of a comprehensive instrument focused on social outcomes may contribute to under-appreciation of the importance of social outcomes and their under-representation in PICU outcomes research. A more comprehensive evaluation of social outcomes will improve understanding of overall recovery following pediatric critical illness.

Scoping Review: Neurocognitive Outcome Assessments After Critical Illness in Children.

OBJECTIVES: To map the literature regarding assessment of neurocognitive outcomes in PICU survivors. Secondary objectives were to identify literature gaps and to provide data for development of a Core Outcome Measures Set in the domain. METHODS: Planned, a priori analysis was performed of data from an over-all scoping review of Post-Intensive Care Syndrome-pediatrics (PICS-p) functional outcomes. English-language databases and registries from 1970 to 2017 were searched by a medical librarian to identify manuscripts reporting on Post Intensive Care Syndrome-pediatrics (PICS-p). Further, detailed data extraction for neurocognitive outcomes was performed focusing on study characteristics, instruments used, and populations. RESULTS: 114 instruments evaluated neurocognitive function in 183 manuscripts. 83% of manuscripts were published after 2000. Median of 3 (IQR 2-5) neurocognitive instruments per manuscript were reported. Wechsler Scales (45%), clinical neurologic evaluations (21%), Pediatric Cerebral Performance Category (20%), Bayley Scales of Infant Development (16%), and Vineland Adaptive Behavior Scales (11%) were the most commonly used instruments. Median sample size was 65 (IQR 32-129) subjects. Most (63%) assessments were conducted in-person and parents/guardians (40%) provided the information. Patients with congenital heart disease and traumatic brain injury were most commonly evaluated (31% and 24% of manuscripts, respectively). Adolescents were the most commonly studied age group (34%). Baseline function was infrequently assessed (11% of manuscripts); most studies assessed patients at only one time point after PICU discharge. Within studies, neurocognitive assessments were often combined with others - especially social (18%) and physical (8%). CONCLUSIONS: 183 manuscripts studied the neurocognitive domain of PICS-p. Studies were quantitative and tended to focus on populations with anticipated cognitive impairment. Considerable variability exists among the chosen 114 instruments used; however, 4 instruments were frequently chosen with focus on intelligence, cerebral functioning, and developmental and adaptive behavior. The literature is marked by lack of agreement on methodologies but reflects the burgeoning interest in studying PICS-p neurocognitive outcomes.

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.

PICU Survivorship: Factors Affecting Feasibility and Cohort Retention in a Long-Term Outcomes Study.

Our understanding of longitudinal outcomes of Pediatric Intensive Care Unit (PICU) survivors is limited by the heterogeneity of follow-up intervals, populations, and outcomes assessed. We sought to demonstrate (1) the feasibility of longitudinal multidimensional outcome assessment and (2) methods to promote cohort retention. The objective of this presented study was to provide details of follow-up methodology in a PICU survivor cohort and not to present the outcomes at long-term follow-up for this cohort. We enrolled 152 children aged 0 to 17 years admitted to the PICU in a prospective longitudinal cohort study. We examined resource utilization, family impact of critical illness, and neurodevelopment using the PICU Outcomes Portfolio (POP) Survey which included a study-specific survey and validated tools: 1. Functional Status Scale, 2. Pediatric Evaluation of Disability Inventory Computer Adaptive Test, 3. Pediatric Quality of Life Inventory, 4. Strengths and Difficulties Questionnaire, and 5. Vanderbilt Assessment Scales for Attention Deficit-Hyperactivity Disorder. POP Survey completion rates were 89%, 78%, and 84% at 1, 3, and 6 months. Follow-up rates at 1, 2, and 3 years were 80%, 55%, and 43%. Implementing a longitudinal multidimensional outcome portfolio for PICU survivors is feasible within an urban, tertiary-care, academic hospital. Our attrition after one year demonstrates the long-term follow-up challenges in this population. Our findings inform ongoing efforts to implement core outcome sets after pediatric critical illness.

Mortality and PICU Hospitalization Among Pediatric Gunshot Wound Victims in Chicago.

Firearm injury accounts for significant morbidity with high mortality among children admitted to the PICU. Understanding risk factors for PICU admission is an important step toward developing prevention and intervention strategies to minimize the burden of pediatric gunshot wound (GSW) injury. OBJECTIVES: The primary objective of this study was to characterize outcomes and the likelihood of PICU admission among children with GSWs. DESIGN SETTING AND PARTICIPANTS: Retrospective cohort study of GSW patients 0-18 years old evaluated at the University of Chicago Comer Children's Hospital Pediatric Trauma Center from 2010 to 2017. MAIN OUTCOMES AND MEASURES: Demographic and injury severity measures were acquired from an institutional database. We describe mortality and hospitalization characteristics for the cohort. We used logistic regression models to test the association between PICU admission and patient characteristics. RESULTS: During the 8-year study period, 294 children experienced GSWs. We did not observe trends in overall mortality over time, but mortality for children with GSWs was higher than all-cause PICU mortality. Children 0-6 years old experienced longer hospitalizations compared with children 13-16 years old (5 vs 3 d; p = 0.04) and greater frequency of PICU admission (83.3% vs 52.9%; p = 0.001). Adjusting for severity of illness, children less than 7 years old were four-fold more likely to be admitted to the PICU than children 13-16 years old (aOR range, 3.9-4.6). CONCLUSIONS AND RELEVANCE: Despite declines in pediatric firearm mortality across the United States, mortality did not decrease over time in our cohort and was higher than all-cause PICU mortality. Younger children with GSWs experience longer hospitalizations and require PICU care more often than older children. Our findings suggest that the youngest victims of firearm-related injury may be particularly at-risk of the long-term sequelae of critical illness and injury.

Improvement in Health-Related Quality of Life After Community Acquired Pediatric Septic Shock.

Background: Although some pediatric sepsis survivors experience worsening health-related quality of life (HRQL), many return to their pre-illness HRQL. Whether children can improve beyond baseline is not known. We examined a cohort of pediatric sepsis survivors to determine if those with baseline HRQL scores below the population mean could exhibit ≥10% improvement and evaluated factors associated with improvement. Methods: In this secondary analysis of the Life After Pediatric Sepsis Evaluation prospective study, children aged 1 month to 18 years admitted to 12 academic PICUs in the United States with community-acquired septic shock who survived to 3 months and had baseline HRQL scores ≤ 80 (i.e., excluding those with good baseline HRQL to allow for potential improvement) were included. HRQL was measured using the Pediatric Quality of Life Inventory or Stein-Jessop Functional Status Scale. Findings: One hundred and seventeen children were eligible. Sixty-one (52%) had ≥ 10% improvement in HRQL by 3 months. Lower pre-sepsis HRQL was associated with increased odds of improvement at 3 months [aOR = 1.08, 95% CI (1.04-1.11), p < 0.001] and 12 months [OR = 1.05, 95% CI (1.02-1.11), p = 0.005]. Improvement in HRQL was most prevalent at 3 month follow-up; at 12 month follow-up, improvement was more sustained among children without severe developmental delay compared to children with severe developmental delay. Interpretation: More than half of these children with community acquired septic shock experienced at least a 10% improvement in HRQL from baseline to 3 months. Children with severe developmental delay did not sustain this improvement at 12 month follow-up.

Health-related quality of life outcome measures for children surviving critical care: a scoping review.

PURPOSE: Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research. METHODS: We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970-2017. We used dual review for article selection and data extraction. RESULTS: Of 60,349 citations, 66 articles met inclusion criteria. The majority of studies were observational (89.4%) and assessed HRQL at one post-discharge time-point (86.4%), and only 10.6% of studies included a baseline assessment. Time to the first follow-up assessment ranged from 1 month to 10 years post-hospitalization (median 3 years, IQR 0.5-6). For 26 prospective studies, the median follow-up time was 0.5 years [IQR 0.25-1]. Parent/guardian proxy-reporting was used in 83.3% of studies. Fifteen HRQL instruments were employed, with four used in >5% of articles: the Health Utility Index (n = 22 articles), the Pediatric Quality of Life Inventory (n = 17), the Child Health Questionnaire (n = 16), and the 36-Item Short Form Survey (n = 9). CONCLUSION: HRQL assessment in pediatric critical care research has been centered around four instruments, though existing literature is limited by minimal longitudinal follow-up and infrequent assessment of baseline HRQL.