Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions.

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital. METHODS: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020-March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across 5 domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age. RESULTS: 266 children with CCCs died in the study timeframe; 45% were infants (n=120), 52% (n=137) were male, 42% (n=113) were white, 64% (n=170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of 3 CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the 2 years prior to death, 98% (n=261) had an ICU admission, 75% (n=200) had a procedure requiring sedation, and 29% (n=79) had received cardiopulmonary resuscitation. 86% (n=229) died in the ICU. CONCLUSION: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last 2 years of life.

Quality of Care for Youth Hospitalized for Suicidal Ideation and Self-Harm.

OBJECTIVE: To examine performance on quality measures for pediatric inpatient suicidal ideation/self-harm care, and whether performance is associated with reutilization. METHODS: Retrospective observational 8 hospital study of patients [N = 1090] aged 5 to 17 years hospitalized for suicidal ideation/self-harm between 9/1/14 and 8/31/16. Two medical records-based quality measures assessing suicidal ideation/self-harm care were evaluated, one on counseling caregivers regarding restricting access to lethal means and the other on communication between inpatient and outpatient providers regarding the follow-up plan. Multivariable logistic regression assessed associations between quality measure scores and 1) hospital site, 2) patient demographics, and 3) 30-day emergency department return visits and inpatient readmissions. RESULTS: Medical record documentation revealed that, depending on hospital site, 17% to 98% of caregivers received lethal means restriction counseling (mean 70%); inpatient-to-outpatient provider communication was documented in 0% to 51% of cases (mean 16%). The odds of documenting receipt of lethal means restriction counseling was higher for caregivers of female patients compared to caregivers of male patients (adjusted odds ratio [aOR] 1.51, 95% confidence interval [CI], 1.07-2.14). The odds of documenting inpatient-to-outpatient provider follow-up plan communication was lower for Black patients compared to White patients (aOR 0.45, 95% CI, 0.24-0.84). All-cause 30-day readmission was lower for patients with documented caregiver receipt of lethal means restriction counseling (aOR 0.48, 95% CI, 0.28-0.83). CONCLUSIONS: This study revealed disparities and deficits in the quality of care received by youth with suicidal ideation/self-harm. Providing caregivers lethal means restriction counseling prior to discharge may help to prevent readmission.

Biomarkers for Estimating Risk of Hospital Mortality and Long-Term Quality-of-Life Morbidity After Surviving Pediatric Septic Shock: A Secondary Analysis of the Life After Pediatric Sepsis Evaluation Investigation.

OBJECTIVES: The Life After Pediatric Sepsis Evaluation investigation recently reported that one-third of children who survive sepsis experience significant health-related quality-of-life impairment compared with baseline at 1 year after hospitalization. Pediatric Sepsis Biomarker Risk Model is a multibiomarker tool for estimating baseline risk of mortality among children with septic shock. We determined if the Pediatric Sepsis Biomarker Risk Model biomarkers have predictive capacity for estimating the risk of hospital mortality and long-term health-related quality-of-life morbidity among children with community-acquired septic shock. DESIGN: Secondary analysis. SETTING: Twelve academic PICUs. PATIENTS: A subset of Life After Pediatric Sepsis Evaluation subjects (n = 173) with available blood samples. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three predefined outcomes from the Life After Pediatric Sepsis Evaluation investigation were evaluated: all-cause hospital mortality (n = 173), and the composite outcome of mortality or persistent, serious deterioration of health-related quality of life (> 25% below baseline) among surviving children at 1 month (n = 125) or 3 months (n = 117). Pediatric Sepsis Biomarker Risk Model had an area under the receiver operating characteristic curve of 0.73 (95% CI, 0.59-0.87; p = 0.002) for estimating the risk of hospital mortality and was independently associated with increased odds of hospital mortality. In multivariable analyses, Pediatric Sepsis Biomarker Risk Model was not independently associated with increased odds of the composite outcome of mortality or deterioration of persistent, serious deterioration health-related quality of life greater than 25% below baseline. A new decision tree using the Pediatric Sepsis Biomarker Risk Model biomarkers had an area under the receiver operating characteristic curve of 0.87 (95% CI, 0.80-0.95) for estimating the risk of persistent, serious deterioration health-related quality of life at 3 months among children who survived septic shock. CONCLUSIONS: Pediatric Sepsis Biomarker Risk Model had modest performance for estimating hospital mortality in an external cohort of children with community-acquired septic shock. The Pediatric Sepsis Biomarker Risk Model biomarkers appear to have utility for estimating the risk of persistent, serious deterioration of health-related quality of life up to 3 months after surviving septic shock. These findings suggest an opportunity to develop a clinical tool for early assignment of risk for long-term health-related quality-of-life morbidity among children who survive septic shock.

Health-Related Quality of Life After Community-Acquired Septic Shock in Children With Preexisting Severe Developmental Disabilities.

OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.

Trajectories and Risk Factors for Altered Physical and Psychosocial Health-Related Quality of Life After Pediatric Community-Acquired Septic Shock.

OBJECTIVES: To evaluate the physical and psychosocial domains of health-related quality of life among children during the first year following community-acquired septic shock, and explore factors associated with poor physical and psychosocial health-related quality of life outcomes. DESIGN: Secondary analysis of the Life After Pediatric Sepsis Evaluation. SETTING: Twelve academic PICUs in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old who were perceived to be without severe developmental disability by their family caregiver at baseline and who survived hospitalization for community-acquired septic shock. INTERVENTIONS: Family caregivers completed the Pediatric Quality of Life Inventory for children 2-18 years old or the Pediatric Quality of Life Inventory Infant Scales for children less than 2 years old at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Higher Pediatric Quality of Life Inventory Physical and Psychosocial Health Summary Scores indicate better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 204 children, 58 (28.2%) had a complex chronic comorbid condition. Children with complex chronic comorbid conditions had lower baseline physical health-related quality of life (62.7 ± 22.6 vs 84.1 ± 19.7; p < 0.001) and psychosocial health-related quality of life (68.4 ± 14.1 vs 81.2 ± 15.3; p < 0.001) than reference norms, whereas children without such conditions had baseline scores similar to reference norms. Children with complex chronic comorbid conditions recovered to their baseline health-related quality of life, whereas children without such conditions did not (physical health-related quality of life 75.3 ± 23.7 vs 83.2 ± 20.1; p = 0.008 and psychosocial health-related quality of life 74.5 ± 18.7 vs 80.5 ± 17.9; p = 0.006). Age less than 2 years was independently associated with higher month 12 physical health-related quality of life, and abnormal neurologic examination and neurologic injury suspected by a healthcare provider during the PICU course were independently associated with lower month 12 physical health-related quality of life. Treatment of increased intracranial pressure and medical device use at month 1 were independently associated with lower month 12 psychosocial health-related quality of life. CONCLUSIONS: Physical and psychosocial health-related quality of life were reduced among children during the first year following community-acquired septic shock compared with reference norms, although many recovered to baseline. Risk factors for poor health-related quality of life included neurologic complications during the hospitalization and dependence on a medical device 1 month postadmission.

Longitudinal Trajectories of Caregiver Distress and Family Functioning After Community-Acquired Pediatric Septic Shock.

OBJECTIVES: To identify trajectories and correlates of caregiver distress and family functioning in families of children who survived community-acquired septic shock. We hypothesized that: 1) a substantial subset of families would demonstrate trajectories of persistent elevated caregiver distress and impaired family functioning 12 months after hospitalization and 2) sociodemographic and clinical risk factors would be associated with trajectories of persistent distress and family dysfunction. DESIGN: Prospective cohort. SETTING: Fourteen PICUs in the United States. PATIENTS: Caregivers of 260 children who survived community-acquired septic shock. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Caregivers completed ratings of distress on the Brief Symptom Inventory and of family functioning on the Family Assessment Device at baseline, 1, 3, 6, and 12 months after hospitalization. Results from group-based trajectory modeling indicated that 67% of the current sample was characterized by persistent low caregiver distress, 26% by persistent moderate to high distress that remained stable across 12 months (high-risk caregiver distress group), and 8% by initial high distress followed by gradual recovery. Forty percent of the sample was characterized by stable high family functioning, 15% by persistent high dysfunction across 12 months (high-risk family functioning group), 12% by gradually improving functioning, and 32% by deteriorating function over time. Independently of age, child race was associated with membership in the high-risk caregiver distress group (non-white/Hispanic; effect size, -0.12; p = 0.010). There were no significant sociodemographic or clinical correlates of the high-risk family functioning group in multivariable analyses. CONCLUSIONS: Although the majority of families whose children survived community-acquired septic shock were characterized by resilience, a subgroup demonstrated trajectories of persistently elevated distress and family dysfunction during the 12 months after hospitalization. Results suggest a need for family-based psychosocial screening after pediatric septic shock to identify and support at-risk families.

Critical Illness Factors Associated With Long-Term Mortality and Health-Related Quality of Life Morbidity Following Community-Acquired Pediatric Septic Shock.

OBJECTIVES: A companion article reports the trajectory of long-term mortality and significant health-related quality of life disability among children encountering septic shock. In this article, the investigators examine critical illness factors associated with these adverse outcomes. DESIGN: Prospective, cohort-outcome study, conducted 2013-2017. SETTING: Twelve United States academic PICUs. PATIENTS: Critically ill children, 1 month to 18 years, with community-acquired septic shock requiring vasoactive-inotropic support. INTERVENTIONS: Illness severity, organ dysfunction, and resource utilization data were collected during PICU admission. Change from baseline health-related quality of life at the month 3 follow-up was assessed by parent proxy-report employing the Pediatric Quality of Life Inventory or the Stein-Jessop Functional Status Scale. MEASUREMENTS AND MAIN RESULTS: In univariable modeling, critical illness variables associated with death and/or persistent, serious health-related quality of life deterioration were candidates for multivariable modeling using Bayesian information criterion. The most clinically relevant multivariable models were selected among models with near-optimal statistical fit. Three months following septic shock, 346 of 389 subjects (88.9%) were alive and 43 of 389 had died (11.1%); 203 of 389 (52.2%) had completed paired health-related quality of life surveys. Pediatric Risk of Mortality, cumulative Pediatric Logistic Organ Dysfunction scores, PICU and hospital durations of stay, maximum and cumulative vasoactive-inotropic scores, duration of mechanical ventilation, need for renal replacement therapy, extracorporeal life support or cardiopulmonary resuscitation, and appearance of pathologic neurologic signs were associated with adverse outcomes in univariable models. In multivariable regression analysis (odds ratio [95% CI]), summation of daily Pediatric Logistic Organ Dysfunction scores, 1.01/per point (1.01-1.02), p < 0.001; highest vasoactive-inotropic score, 1.02/per point (1.00-1.04), p = 0.003; and any acute pathologic neurologic sign/event, 5.04 (2.15-12.01), p < 0.001 were independently associated with death or persistent, serious deterioration of health-related quality of life at month 3. CONCLUSIONS AND RELEVANCE: Biologically plausible factors related to sepsis-associated critical illness organ dysfunction and its treatment were associated with poor outcomes at month 3 follow-up among children encountering septic shock.

Trajectory of Mortality and Health-Related Quality of Life Morbidity Following Community-Acquired Pediatric Septic Shock.

OBJECTIVES: In-hospital pediatric sepsis mortality has decreased substantially, but long-term mortality and morbidity among children initially surviving sepsis, is unknown. Accordingly, the Life After Pediatric Sepsis Evaluation investigation was conducted to describe the trajectory of mortality and health-related quality of life morbidity for children encountering community-acquired septic shock. DESIGN: Prospective, cohort-outcome study, conducted 2013-2017. SETTING: Twelve academic PICUs in the United States. PATIENTS: Critically ill children, 1 month to 18 years, with community-acquired septic shock requiring vasoactive-inotropic support. INTERVENTIONS: Demographic, infection, illness severity, organ dysfunction, and resource utilization data were collected daily during PICU admission. Serial parent proxy-report health-related quality of life assessments were obtained at baseline, 7 days, and 1, 3, 6, and 12 months following PICU admission utilizing the Pediatric Quality of Life Inventory or Stein-Jessop Functional Status Scale. MEASUREMENTS AND MAIN RESULTS: Among 389 children enrolled, mean age was 7.4 ± 5.8 years; 46% were female; 18% were immunocompromised; and 51% demonstrated chronic comorbidities. Baseline Pediatric Overall Performance Category was normal in 38%. Median (Q1-Q3) Pediatric Risk of Mortality and Pediatric Logistic Organ Dysfunction scores at PICU admission were 11.0 (6.0-17.0) and 9.0 (6.0-11.0); durations of vasoactive-inotropic and mechanical ventilation support were 3.0 days (2.0-6.0 d) and 8.0 days (5.0-14.0 d); and durations of PICU and hospital stay were 9.4 days (5.6-15.4 d) and 15.7 days (9.2-26.0 d). At 1, 3, 6, and 12 months following PICU admission for the septic shock event, 8%, 11%, 12%, and 13% of patients had died, while 50%, 37%, 30%, and 35% of surviving patients had not regained their baseline health-related quality of life. CONCLUSIONS: This investigation provides the first longitudinal description of long-term mortality and clinically relevant, health-related quality of life morbidity among children encountering community-acquired septic shock. Although in-hospital mortality was 9%, 35% of survivors demonstrated significant, health-related quality of life deterioration from baseline that persisted at least 1 year following hospitalization for septic shock.

Pediatric Respiratory Illness Measurement System (PRIMES) Scores and Outcomes.

BACKGROUND AND OBJECTIVES: The Pediatric Respiratory Illness Measurement System (PRIMES) generates condition-specific composite quality scores for asthma, bronchiolitis, croup, and pneumonia in hospital-based settings. We sought to determine if higher PRIMES composite scores are associated with improved health-related quality of life, decreased length of stay (LOS), and decreased reuse. METHODS: We conducted a prospective cohort study of 2334 children in 5 children's hospitals between July 2014 and June 2016. Surveys administered on admission and 2 to 6 weeks postdischarge assessed the Pediatric Quality of Life Inventory (PedsQL). Using medical records data, 3 PRIMES scores were calculated (0-100 scale; higher scores = improved adherence) for each condition: an overall composite (including all quality indicators for the condition), an overuse composite (including only indicators for care that should not be provided [eg, chest radiographs for bronchiolitis]), and an underuse composite (including only indicators for care that should be provided [eg, dexamethasone for croup]). Multivariable models assessed relationships between PRIMES composite scores and (1) PedsQL improvement, (2) LOS, and (3) 30-day reuse. RESULTS: For every 10-point increase in PRIMES overuse composite scores, LOS decreased by 8.8 hours (95% confidence interval [CI] -11.6 to -6.1) for bronchiolitis, 3.1 hours (95% CI -5.5 to -1.0) for asthma, and 2.0 hours (95% CI -3.9 to -0.1) for croup. Bronchiolitis overall composite scores were also associated with shorter LOS. PRIMES composites were not associated with PedsQL improvement or reuse. CONCLUSIONS: Better performance on some PRIMES condition-specific composite measures is associated with decreased LOS, with scores on overuse quality indicators being a primary driver of this relationship.

Development and Testing of the Pediatric Respiratory Illness Measurement System (PRIMES) Quality Indicators.

OBJECTIVES: To develop and test quality indicators for assessing care in pediatric hospital settings for common respiratory illnesses. PATIENTS: A sample of 2796 children discharged from the emergency department or inpatient setting at 1 of the 3 participating hospitals with a primary diagnosis of asthma, bronchiolitis, croup, or community-acquired pneumonia (CAP) between January 1, 2010, and December 31, 2011. SETTING: Three tertiary care children's hospitals in the United States. METHODS: We developed evidence-based quality indicators for asthma, bronchiolitis, croup, and CAP. Expert panel-endorsed indicators were included in the Pediatric Respiratory Illness Measurement System (PRIMES). This new set of pediatric quality measures was tested to assess feasibility of implementation and sensitivity to variations in care. Medical records data were extracted by trained abstractors. Quality measure scores (0-100 scale) were calculated by dividing the number of times indicated care was received by the number of eligible cases. Score differences within and between hospitals were determined by using the Student's t-test or analysis of variance. RESULTS: CAP and croup condition-level PRIMES scores demonstrated significant between-hospital variations (P < .001). Asthma and bronchiolitis condition-level PRIMES scores demonstrated significant within-hospital variation with emergency department scores (means [SD] 82.2(6.1)-100.0 (14.4)] exceeding inpatient scores (means [SD] 71.1 (2.0)-90.8 (1.3); P < .001). CONCLUSIONS: PRIMES is a new set of measures available for assessing the quality of hospital-based care for common pediatric respiratory illnesses.

Quality Measures to Assess Care Transitions for Hospitalized Children.

BACKGROUND: Transitions between sites of care are inherent to all hospitalizations, yet we lack pediatric-specific transitions-of-care quality measures. We describe the development and validation of new transitions-of-care quality measures obtained from medical record data. METHODS: After an evidence review, a multistakeholder panel prioritized quality measures by using the RAND/University of California, Los Angeles modified Delphi method. Three measures were endorsed, operationalized, and field-tested at 3 children's hospitals and 2 community hospitals: quality of hospital-to-home transition record content, timeliness of discharge communication between inpatient and outpatient providers, and ICU-to-floor transition note quality. Summary scores were calculated on a scale from 0 to 100; higher scores indicated better quality. We examined between-hospital variation in scores, associations of hospital-to-home transition quality scores with readmission and emergency department return visit rates, and associations of ICU-to-floor transition quality scores with ICU readmission and length of stay. RESULTS: A total of 927 charts from 5 hospitals were reviewed. Mean quality scores were 65.5 (SD 18.1) for the hospital-to-home transition record measure, 33.3 (SD 47.1) for the discharge communication measure, and 64.9 (SD 47.1) for the ICU-to-floor transition measure. The mean adjusted hospital-to-home transition summary score was 61.2 (SD 17.1), with significant variation in scores between hospitals (P < .001). Hospital-to-home transition quality scores were not associated with readmissions or emergency department return visits. ICU-to-floor transition note quality scores were not associated with ICU readmissions or hospital length of stay. CONCLUSIONS: These quality measures were feasible to implement in diverse settings and varied across hospitals. The development of these measures is an important step toward standardized evaluation of the quality of pediatric transitional care.