Adherence with post-hospitalization follow-up after pediatric critical illness due to respiratory failure.

BACKGROUND: Adherence with follow-up appointments after a pediatric intensive care unit (PICU) admission is likely a key component in managing post-PICU sequalae. However, prior work on PICU follow-up adherence is limited. The objective of this study is to identify hospitalization characteristics, discharge child health metrics, and follow-up characteristics associated with full adherence with recommended follow-up at a quaternary care center after a PICU admission due to respiratory failure. METHODS: We conducted a retrospective cohort study of patients ≤ 18 years with respiratory failure admitted between 1/2013-12/2014 to a quaternary care PICU. Post-hospitalization full adherence with recommended follow-up in the two years post discharge (1/2013-3/2017) at the quaternary care center was quantified and compared by demographics, baseline child health metrics, hospitalization characteristics, discharge child health metrics, and follow-up characteristics in bivariate and multivariate analyses. Patients were dichotomized into being non-adherent with follow-up (patients who attended less than 100% of recommended appointments at the quaternary care center) and fully adherent (patients who attended 100% of recommended appointments at the quaternary care center). RESULTS: Of 155 patients alive at hospital discharge, 140 (90.3%) were recommended to follow-up at the quaternary care center. Of the 140 patients with recommended follow-up at the quaternary care center, 32.1% were non-adherent with follow-up and 67.9% were fully adherent. In a multivariable logistic regression model, each additional recommended unique follow-up appointment was associated with lower odds of being fully adherent with follow-up (OR 0.74, 95% CI 0.60-0.91, p = 0.005), and each 10% increase in the proportion of appointments scheduled before discharge was associated with higher odds of being fully adherent with follow-up (OR 1.02, 95% CI 1.01-1.03, p = 0.004). CONCLUSIONS: After admission for acute respiratory failure, only two-thirds of children were fully adherent with recommended follow-up at a quaternary care center. Our findings suggest that limiting the recommended follow-up to only key essential healthcare providers and working to schedule as many appointments as possible before discharge could improve follow-up adherence. However, a better understanding of the factors that lead to non-adherence with follow-up appointments is needed to inform broader system-level approaches could help improve PICU follow-up adherence.

Family Outcomes After the Pediatric Intensive Care Unit: A Scoping Review.

BACKGROUND: Intensivists are increasingly attuned to the postdischarge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness. In this scoping review of international contemporary literature, we describe the evidence of family effects and functioning postpediatric intensive care unit (PICU) as well as outcome measures used to identify strengths and weaknesses in the literature. METHODS: We reviewed all articles published between 1970 and 2017 in PubMed, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health Literature (CINAHL), or the Cochrane Controlled Trials Registry. Our search used a combination of terms for the concept of "critical care/illness" combined with additional terms for the prespecified domains of social, cognitive, emotional, physical, health-related quality of life (HRQL), and family functioning. RESULTS: We identified 71 articles reporting on the postPICU experience of more than 2400 parents and 3600 families of PICU survivors in 8 countries. These articles used 101 different metrics to assess the various aspects of family outcomes; 34 articles also included open-ended interviews. Overall, most families experienced significant disruption in at least five out of six of our family outcomes subdomains, with themes of decline in mental health, physical health, family cohesion, and family finances identified. Almost all articles represented relatively small, single-center, or disease-specific observational studies. There was a disproportionate representation of families of higher socioeconomic status (SES) and Caucasian race, and there was much more data about mothers compared to fathers. There was also very limited information regarding outcomes for siblings and extended family members after a child's PICU stay. CONCLUSIONS: Significant opportunities remain for research exploring family functioning after PICU discharge. We recommend that future work include more diverse populations with respect to the critically ill child as well as family characteristics, include more intervention studies, and enrich existing knowledge about outcomes for siblings and extended family.

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.

Parent Medical Traumatic Stress and Associated Family Outcomes After Pediatric Critical Illness: A Systematic Review.

OBJECTIVES: To critically review, analyze, and synthesize the literature on parent medical traumatic stress from a child's critical illness requiring PICU admission and its association with outcomes of parent mental and physical health, and family functioning. DATA SOURCES: Systematic literature search of Pubmed, Embase, CINAHL, and PsychInfo. STUDY SELECTION: Two reviewers identified peer-reviewed published articles with the following criteria: 1) published between January 1, 1980, and August 1, 2018; 2) published in English; 3) study population of parents of children with a PICU admission; and 4) quantitative studies examining factors associated with outcomes of parent mental health, parent physical health, or family functioning. DATA EXTRACTION: Literature search yielded 2,476 articles, of which 23 studies met inclusion criteria. Study data extracted included study characteristics, descriptive statistics of parent outcomes after critical illness, and variables associated with parent and family outcomes. DATA SYNTHESIS: Studies examined numerous variables associated with parent and family outcomes and used multiple survey measures. These variables were categorized according to their phase in the Integrative Trajectory Model of Pediatric Medical Traumatic Stress, which included peri-trauma, acute medical care, and ongoing care or discharge from care. The majority of objective elements of a child's illness, such as severity of illness and length of hospitalization, did not have a clear relationship with parent and family outcomes. However, familial preexisting factors, a parent's subjective experience in the PICU, and family life stressors after discharge were often associated with parent and family outcomes. CONCLUSIONS: This systematic literature review suggests that parent and family outcomes after pediatric critical illness are impacted by familial preexisting factors, a parent's subjective experience in the PICU, and family life stressors after discharge. Developing parent interventions focused on modifying the parent's subjective experience in the PICU could be an effective approach to improve parent outcomes.

Outcomes and Patterns of Healthcare Utilization After Hospitalization for Pediatric Critical Illness Due to Respiratory Failure.

OBJECTIVES: To quantify home care needs, healthcare utilization, and 2-year mortality after pediatric critical illness due to respiratory failure, and evaluate the impact of new morbidity and abnormal function at hospital discharge on resource use and outcomes. DESIGN: Retrospective cohort study. SETTING: Quaternary care PICU. PATIENTS: Patients less than or equal to 18 years with respiratory failure from January 1, 2013, to December 31, 2014. MEASUREMENTS AND MAIN RESULTS: Patient demographics, hospitalization characteristics, and healthcare utilization were quantified and compared according to morbidity development and discharge functional status. Multivariable regression methods evaluated 2-year readmission rates and mortality by morbidity development and discharge functional status. Of 163 patients, the median age was 2.1 years (interquartile range, 0.6-10.9 yr), 61 (37.4%) had a comorbidity, and 73 (44.8%) had abnormal function at admission. Median ventilation duration was 6.0 days (interquartile range, 3.0-11.7 d), and median PICU and hospital length of stay were 8 (interquartile range, 4-15) and 14 days (interquartile range, 8-23 d), respectively. At hospital discharge, eight of 163 (4.9%) had died, and 14 of 163 (8.6%) had a new morbidity. Of the surviving 155 patients at hospital discharge, 87 (56.1%) had abnormal function, 120 (77.4%) had new medications, 24 (15.5%) had new medical devices, and 43 (27.7%) had new home care equipment. Cumulative 2-year mortality was 14 of 163 (8.6%) with six of 163 (3.7%) occurring after discharge. Within 2 years, 81 of 155 of patients (52.2%) were readmitted, often (58/81, 71.6%) to the PICU. Abnormal function at discharge was associated with elevated odds of readmission to the hospital (odds ratio, 1.49; 1.28-1.74; p < 0.0001) and PICU (odds ratio, 1.47; 1.27-1.71; p < 0.0001) within 2 years. CONCLUSIONS: After critical illness, children have significant new healthcare burdens heretofore unrecognized. Abnormal functional status at hospital discharge was associated with increased healthcare utilization up to 2 years thereafter.

Impression of Primary Care Follow-Up After a PICU Admission: A Pilot Survey of Primary Care Pediatricians.

OBJECTIVES: The majority of PICU general follow-up occurs with primary care providers. Our objective was to investigate primary care pediatricians': 1) comfort with and barriers to caring for children after a PICU admission, 2) knowledge of and screening for post-intensive care syndrome in pediatrics (PICS-P), and 3) resource needs. DESIGN: Pilot cross-sectional survey study. SETTING: Metropolitan Detroit, Michigan from September 2022 to March 2023. SUBJECTS: Primary care pediatricians. MEASUREMENT AND MAIN RESULTS: The survey included 15 questions on provider demographics, comfort with and barriers to caring for children after a PICU admission, knowledge of and screening practices for PICS-P, and resource needs. The median values for continuous data and frequencies for categorical data were calculated. The survey response rate was 17% (26/152). The median age was 38.5 years (interquartile range 34-52 yr) and 19 of 26 (73%) were female. In case studies, 26 of 26 (100%) were "very comfortable" resuming care for a patient with a straightforward bronchiolitis PICU admission while 8 of 26 participants (31%) were "somewhat uncomfortable" and 1 of 26 (4%) was "not at all comfortable" with caring for a patient after a complex acute respiratory distress syndrome PICU admission. Seven of 26 participants (27%) were familiar with the term "post-intensive care syndrome in pediatrics." Over 50% screened for four of five PICS-P domains. Key barriers were care coordination with specialists, discomfort or difficulties with managing new home equipment, and inadequate or missing documentation. CONCLUSIONS: In this pilot study, approximately one-third of primary care pediatricians had knowledge of PICS-P. Participants experienced numerous care barriers. Our findings suggest future research could engage improved study methods and designs, and focus on interventions to support primary care-provided PICU follow-up.

Parent post-traumatic growth after a child's critical illness.

Objective: Post-traumatic growth is the experience of a positive change after a traumatic event. Our objective is to characterize the factors associated with post-traumatic growth in parents after a child's pediatric intensive care unit (PICU) admission. Study design: A cross-sectional survey study examining post-traumatic growth and select independent variables in parents 1 year after a child's ≥72 h PICU admission for an acute illness or injury. The study was completed in parents of children discharge alive from a tertiary care PICU from January 1, 2017 to December 31, 2017. A mixed-effects linear regression model was built to evaluate the association of post-traumatic stress, anxiety, depression, resiliency, family function, and child function with post-traumatic growth. Results: Eighty-two parents of 52 children discharged alive in 2017 completed the survey. Fifty-two percent were ≥35 years and 64.3% were mothers. Median age of their children was 2.8 years (IQR 0.5-11.3) with a median hospital stay of 12 Days (IQR 6-20). Moderate-to-high levels of post-traumatic growth occurred in 67.1% of parents. Increased hospital length of stay (ß Coeff 0.85; p = 0.004, 95% CI 0.27, 1.43) and parent post-traumatic stress symptoms (ß Coeff 1.04; p = 0.006, 95% CI 0.29, 1.78) were associated with increased post-traumatic growth, and increased parent depression symptoms (ß Coeff -1.96; p = 0.015; 95% CI -3.54, -0.38) with decreased post-traumatic growth. Conclusion: Longer child hospital stays and increased parent post-traumatic stress symptoms were associated with increased post-traumatic growth, while increased depression was associated with less post-traumatic growth. The impact of future PICU parent psychosocial interventions on parents may be best assessed using a dual outcome focused on both reducing negative mental health symptoms while concurrently promoting skills to facilitate parent adaptation and post-traumatic growth.

Posthospitalization follow-up recommendations after pediatric critical illness due to respiratory failure.

OBJECTIVES: To characterize the recommended posthospitalization follow-up by provider type and location after a pediatric critical illness due to respiratory failure. WORKING HYPOTHESIS: After pediatric critical illness due to respiratory failure, patients will not have a standard follow-up pattern with regard to provider type or follow-up location. STUDY DESIGN: A retrospective cohort study. SUBJECT SELECTION: Children, 18 years or younger, admitted to a quaternary care pediatric intensive care unit with respiratory failure between January 1, 2013 and December 31, 2014. METHODOLOGY: For eligible patients, recommendations for posthospitalization follow-up including provider type (primary care and specialty care) and location (community care center vs. tertiary care center) were characterized from medical chart review. Recommendations were examined for all patients and two patient subgroups (patients who received extracorporeal membrane oxygenation and patients with tracheostomy). RESULTS: Of 155 patients alive at hospital discharge, the median age was 2.1 (interquartile range, 0.7-10.6) years. Eighty percent of patients were instructed to follow-up with a primary care provider but only 52.9% with a pulmonologist. We found 10 unique follow-up patterns between provider location (community care center, tertiary care center, or both) and global provider type (primary care versus specialty care). Primary care follow-up was recommended more often at community locations (74.2%), whereas specialty care was more often recommended at tertiary care centers (68.6%). CONCLUSIONS: Our study findings demonstrate significant variability in the recommendations for follow-up by provider type and location after hospitalization for acute respiratory failure and highlight areas for improvement in follow-up care after pediatric critical illness.

Three Cases of Pediatric Multisystem Inflammatory Syndrome Associated with COVID-19 Due to SARS-CoV-2.

BACKGROUND Coronavirus disease 2019 (COVID-19) infection commonly presents as fever, cough, and shortness of breath in adults. Children are thought to have milder respiratory symptoms and to recover more quickly. We describe a new presentation of COVID-19 infection in children consisting of multisystem inflammation with decreased left ventricular function and evidence of lung disease. CASE REPORT Three children presented with fever, conjunctivitis, dry and cracked lips, rash, and/or cervical lymphadenopathy for at least 5 days. Two of these children required mechanical ventilation, and 1 of the 2 needed extracorporeal membrane oxygenation (ECMO) to support cardiorespiratory function. All of these children had moderate to severe hyponatremia and lymphopenia, which is usually seen in COVID-19. They were treated with intravenous immunoglobulin and high-dose aspirin. All of the children recovered. CONCLUSIONS Early recognition of children with multisystem inflammation is important because they are at increased risk for deterioration. Treatment with intravenous immunoglobulin and aspirin was used because this regimen has been shown to be beneficial in vasculitis of Kawasaki disease. The development of shock due to cardiac involvement may require ECMO.