Complex Chronic Conditions Research Articles

Mortality following admission to the paediatric intensive care unit: A Swedish longitudinal cohort study.

This study aimed to compare outcomes post-admission to a Swedish paediatric intensive care unit (PICU) in children with complex chronic conditions (CCC) and without CCC. In this observational registry-based study, consecutive admissions to the Astrid Lindgren Children's Hospital PICU from 1 January 2008 to 31 December 2016 were analysed. Data on demographics, predicted death rates (PDR), admission diagnoses and causes of death were collected. Mortality was recorded up to 15 years after admission and compared between groups. Patients with CCC constituted 64.6% (n = 3026) of PICU admissions and 83.5% (n = 111) of PICU deaths. The crude mortality rate in PICU was 2.84% overall. CCC-patients were 2.83 times more likely to die in PICU compared to non-CCC (OR 2.83; 95% CI: 1.78-4.49). Mortality increased in the CCC-cohort up to 5 years after PICU discharge, while non-CCC patients generally survived if they survived in PICU. Of the patients who died in PICU, the median PDR was 22.9% for CCC-patients and 66.5% in the non-CCC cohort. Children with CCC accounted for most admissions and deaths in PICU. Despite lower severity of illness scores upon admission, CCC patients were nearly three times more likely to die in PICU compared to non-CCC patients.

Substance Use Emergency Department Visits Among Youths With Chronic Conditions During COVID-19

Pediatric emergency department (ED) visits for substance use (SU) increased during COVID-19. Better understanding of trends associated with SU ED visits among youths with a chronic medical condition (CMC) is needed to target SU screening, prevention, and intervention efforts in this population. To describe trends in pediatric SU ED visits before and during COVID-19 among youths in the US with and without CMCs and by race and ethnicity. In this cohort study, data were obtained from 47 US children's hospital EDs in the Pediatric Health Information System (PHIS) between March 1, 2018, and March 1, 2022. The cohort included patients aged 10 to 18 years. Data analysis occurred from November 2022 to February 2023. ED visit occurrence before or during the COVID-19 pandemic and with or without the presence of a CMC. CMCs included chronic conditions (CCs) and complex CCs (CCCs). The primary outcome was the number of visits for an SU diagnosis based on diagnostic codes for youths with and without CMCs. Trends were assessed using logistic regression, adjusting for covariates and center effect. The sample included 3 722 553 ED visits from March 1, 2018, to March 1, 2022 (1 932 258 aged 14-18 years [51.9%]; 1 969 718 female [52.9%]; 961 121 Hispanic [25.8%]; 977 097 non-Hispanic Black [26.2%]; 1 473 656 non-Hispanic White [39.6%]). Of all visits, 1 016 913 (27.3%) were youths with CCs and 367 934 (9.9%) were youths with CCCs. Youth SU ED visits increased for all groups during COVID-19. The SU ED visits increased by 23% for youths with CCs (21 357 visits [4.0%] to 23 606 visits [4.9%]), by 26% for youths with CCCs (3594 visits [1.9%] to 4244 visits [2.4%]), and by 50% for youths without CCs (4997 visits [0.4%] to 5607 visits [0.6%]). Furthermore, compared with youths without CCs, youths with CCs had consistently larger odds of SU than the other groups before COVID-19 (adjusted odds ratio, 9.74; 99% CI, 9.35-10.15) and during COVID-19 (adjusted odds ratio, 8.58; 99% CI, 8.25-8.92). The interaction between race and ethnicity and CMCs was significant (P for interaction < .001). The findings of this cohort study suggest that providing SU services to all youths during times of societal crises is critical, but particularly for youths with CMCs who experience higher potential health impacts from SU given their medical concerns.

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Assessing the feasibility and likelihood of policy options to lower specialty drug costs.

Specialty drugs are high-cost medications often used to treat complex chronic conditions. Even with insurance coverage, patients may face very high out-of-pocket costs, which in turn may restrict access. While the Inflation Reduction Act of 2022 included policies designed to reduce specialty drug costs, relatively few policies have been enacted during the past decade. In 2022-2023, we conducted a scoping literature review to identify a range of policy options and selected a set of 9 that have been regularly discussed or recently considered to present to an expert stakeholder panel to seek consensus on (1) the feasibility of implementing each policy and (2) its likely impact on drug costs. Experts rated only 1 policy highly on both feasibility and impact: grouping originator biologics and biosimilars under the same Medicare Part B reimbursement code. They rated 3 policies focused on setting payment limits as likely to have positive (downward) impact on costs but of uncertain feasibility. They considered 4 policies as uncertain on both criteria. Experts rated capping monthly out-of-pocket costs as feasible but unlikely to reduce specialty drug costs. Based on these results, we offer 4 recommendations to policymakers considering ways to reduce specialty drug costs.

Frequency of and Risk Factors for Increased Healthcare Utilization After Pediatric Sepsis Hospitalization.

To determine the frequency of and risk factors for increased post-sepsis healthcare utilization compared with pre-sepsis healthcare utilization. Retrospective observational cohort study. Years 2016-2019 MarketScan Commercial and Medicaid Database. Children (0-18 yr) with sepsis treated in a U.S. hospital. None. We measured the frequency of and risk factors for increased healthcare utilization in the 90 days post- vs. pre-sepsis hospitalization. We defined increased healthcare utilization as an increase of at least 3 days in the 90 days post-hospitalization compared with the 90 days pre-hospitalization based on outpatient, emergency department, and inpatient hospitalization. We identified 2801 patients hospitalized for sepsis, of whom 865 (30.9%) had increased healthcare utilization post-sepsis, with a median (interquartile range [IQR]) of 3 days (1-6 d) total in the 90 days pre-sepsis and 10 days (IQR, 6-21 d) total in the 90 days post-sepsis ( p < 0.001). In multivariable models, the odds of increased healthcare use were higher for children with longer lengths of hospitalization (> 30 d adjusted odds ratio [aOR], 4.35; 95% CI, 2.99-6.32) and children with preexisting complex chronic conditions, specifically renal (aOR, 1.47; 95% CI, 1.02-2.12), hematologic/immunologic (aOR, 1.34; 95% CI, 1.03-1.74), metabolic (aOR, 1.39; 95% CI, 1.08-1.79), and malignancy (aOR, 1.89; 95% CI, 1.38-2.59). In this nationally representative cohort of children who survived sepsis hospitalization in the United States, nearly one in three had increased healthcare utilization in the 90 days after discharge. Children with hospitalizations longer than 30 days and complex chronic conditions were more likely to experience increased healthcare utilization.

Pediatric Long COVID Subphenotypes: An EHR-based study from the RECOVER program.

Pediatric Long COVID has been associated with a wide variety of symptoms, conditions, and organ systems, but distinct clinical presentations, or subphenotypes, are still being elucidated. In this exploratory analysis, we identified a cohort of pediatric (age <21) patients with evidence of Long COVID and no pre-existing complex chronic conditions using electronic health record data from 38 institutions and used an unsupervised machine learning-based approach to identify subphenotypes. Our method, an extension of the Phe2Vec algorithm, uses tens of thousands of clinical concepts from multiple domains to represent patients' clinical histories to then identify groups of patients with similar presentations. The results indicate that cardiorespiratory presentations are most common (present in 54% of patients) followed by subphenotypes marked (in decreasing order of frequency) by musculoskeletal pain, neuropsychiatric conditions, gastrointestinal symptoms, headache, and fatigue.

Diversity in Combating Complex, Chronic, and Costly Conditions Using a Learning Health System Approach: A Scoping Review.

The purpose of this scoping review was to investigate in the literature how a learning health system (LHS) can be implemented in cases of complex, costly, chronic (3C) conditions. A scoping review of literature published in English since 2007 was conducted using Medline, Cumulative Index to Nursing and Allied Health Literature, and Scopus. Two authors screened the resulting articles and two authors extracted study details on the structure, process, and outcome of each LHS. Eligibility criteria included studies of LHSs that focused on populations experiencing a complex chronic health condition. A narrative synthesis of data was conducted using deductive qualitative methods. Application of the authors' search strategy resulted in 656 publications that were analyzed for this review. The authors included 17 studies that focused on 13 LHSs. The structure of the LHSs had many components, and many included data from either patient surveys or patient charts. The processes varied widely, from engaging patients in the process to exclusively analyzing the data. The outcomes were largely patient-reported, though several clinical outcomes were also used to benchmark the success of the LHS. Our review shows that LHS definitions, structures, processes, and outcomes in 3C applications vary widely. Many have shown substantial potential to be implemented and improve care in 3C populations. To deliver on this goal, future work will need to focus on better specification, formalization, and definition of LHS approaches, as well as better design of their structures, processes, and outcomes to fit the needs of the intended population.

Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India.

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT/ RCPCH classification system. The mean age in our study was 5.15years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT/RCPCH. Conclusion: Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children. What is known: • Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses. • Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions. What is new: • This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions. • It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).

Evaluation of serum vitamin B12 and D, iron, ferritin, folate, calcium, phosphorus and magnesium levels in children in palliative care clinic: a single-center cross-sectional study

BackgroundPediatric palliative care (PPC) patients are at an elevated risk of malnutrition. Nutritional inadequacy can also cause micronutrient deficiencies. These factors can lead to weight loss, stunted growth, and poor quality of life. Despite the prevalence of these issues, limited research exists in the micronutrient status of PPC patients. The purpose of this study was to determine the vitamin B12 and D, iron, ferritin, folate, calcium, phosphorus, and magnesium levels of PPC patients to contribute to a better understanding of their micronutrient needs as well as the appropriate management of diet and treatment approaches.MethodsThis was a single-center observational cross-sectional retrospective study. This study evaluated the levels of vitamin B12, 25-hydroxyvitamin D, iron, ferritin, folate, calcium, phosphorus, and magnesium in PPC patients. The patients were classified according to the Chronic Complex Conditions (CCC) v2 and then compared.ResultsA total of 3,144 micronutrient data points were collected from 822 hospitalizations of 364 patients. At least one micronutrient deficiency was identified in 96.9% of the patients. The most prevalent deficiencies were observed for iron, calcium, and phosphate. In addition, 25-hydroxyvitamin D deficiency was observed in one-third of patients. Calcium, magnesium, phosphorus, folate, and 25-hydroxyvitamin D were negatively correlated with age.ConclusionThe results of this study indicate that micronutrient deficiencies are highly prevalent in PPC patients. These findings have the potential to contribute to improvements in the nutritional and therapeutic management of patients.

Age has an independent association with total cost of care in adults admitted to pediatric hospitals.

Previous studies in adults admitted to pediatric hospitals primarily investigated associations between complex chronic condition characteristics and patient outcomes. Our study explored the association of age with length of stay (LOS) and total cost in these adults, accounting for other patient factors. Using the Pediatric Health Information System, we included 1,215,736 patient encounters from 2021 to 2022. Unadjusted and adjusted analyses were performed using bivariable and multivariable log-linear regression. There was a significant positive association between age and total cost, with adults 18-20 years having 13% higher total cost (95% confidence interval [CI]: 12%-15%), 21-25 years with 25% higher total cost (95% CI: 22%-29%), and 25-99 years having 72% higher total cost (95% CI: 66%-79%) than 1-17 years. Our findings suggest expanding upon the existing status quo to identify the most appropriate environment to care for this unique and growing population, especially given the anticipated reduction in pediatric beds and subspecialty expertise.

Population-Based Estimates of the Prevalence of Children With Congenital Heart Disease and Associated Comorbidities in the United States.

Congenital heart defects (CHD) are the most common birth defects and previous estimates report the disease affects 1% of births annually in the United States. To date, CHD prevalence estimates are inconsistent due to varied definitions, data reliant on birth registries, and are geographically limited. These data sources may not be representative of the total prevalence of the CHD population. It is therefore important to derive high-quality, population-based estimates of the prevalence of CHD to help care for this vulnerable population. We performed a descriptive, retrospective 8-year analysis using all-payer claims data from Colorado from 2012 to 2019. Children with CHD were identified by applying International Classification of Diseases-Ninth Revision (ICD-9) and International Classification of Diseases-Tenth Revision (ICD-10) diagnosis codes from the American Heart Association-American College of Cardiology harmonized cardiac codes. We included children with CHD <18 years of age who resided in Colorado, had a documented zip code, and had at least 1 health care claim. CHD type was categorized as simple, moderate, and severe disease. Association with comorbid conditions and genetic diagnoses were analyzed using χ2 test. We used direct standardization to calculate adjusted prevalence rates, controlling for age, sex, primary insurance provider, and urban-rural residence. We identified 1 566 328 children receiving care in Colorado from 2012 to 2019. Of those, 30 512 children had at least 1 CHD diagnosis, comprising 1.95% (95% CI, 1.93-1.97) of the pediatric population. Over half of the children with CHD also had at least 1 complex chronic condition. After direct standardization, the adjusted prevalence rates show a small increase in simple severity diagnoses across the study period (adjusted rate of 11.5 [2012]-14.4 [2019]; P<0.001). The current study is the first population-level analysis of pediatric CHD in the United States. Using administrative claims data, our study found a higher CHD prevalence and comorbidity burden compared with previous estimates.

Mapping Surgical Intervention Trajectories in Seriously Ill Children Receiving Palliative Care

Background/purposeDespite the prevalence of surgical intervention in seriously ill children, data is scarce regarding interventions performed based on type of serious illness. We therefore sought to evaluate the surgical interventions performed from the time of serious illness diagnosis to the present in a cohort of children receiving palliative care, including identification of the surgical specialists involved in these procedures. MethodsWe conducted a retrospective cohort analysis of surgical interventions in 197 children enrolled in a multicenter prospective cohort study (Pediatric Palliative Care Research Network SHARE Study). All surgical interventions were abstracted via clinical record review. Results189 (of 197, 96%) patients (45% female) with an average of 5.3 complex, chronic conditions (CCC) underwent 3331 surgical interventions (median = 13) by 21 specialist teams (most commonly general surgeons). Those with hematologic malignancies underwent intervention most frequently, followed by children with respiratory, genetic/metabolic, and gastrointestinal/genitourinary (GI/GU) diagnoses. Children with cardiovascular disease, malignancies, and prematurity had the shortest time between diagnosis and first intervention and between diagnosis and pediatric palliative care (PPC) services. By contrast, those with genetic, neurologic, and respiratory diagnoses had significantly longer intervals between diagnosis and intervention. ConclusionsNearly all seriously ill children receiving PPC undergo surgical intervention, and many undergo tens of interventions by a variety of subspecialist teams. Surgical intervention differs by serious illness type, with children with more acutely life-limiting illnesses undergoing high-volume, high-risk interventions in the immediate post-diagnosis period. Those with chronic, life-limiting illnesses undergo a higher lifetime volume of interventions that are relatively lower risk and more evenly distributed over time. Level of EvidenceN/A.

Defining and quantifying population-level need for children’s palliative care: findings from a rapid scoping review

BackgroundThe number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children’s palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature.MethodsScoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched. Inclusion criteria: literature published in English; 2008–2023 (Oct); including children aged 0–19 years; focused on defining and/or quantifying population-level need for palliative care.ResultsThree thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The ‘Directory’ of Life-Limiting Conditions; (3) ‘List of Life-Limiting Conditions’; and (4) ‘Complex Chronic Conditions’. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need.ConclusionOverall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting.

Scoping review protocol: what is the state of evidence for the use of communication apps with immigrant seniors in long-term care and community settings?

First language care is critical for older immigrant adults with limited English proficiency, especially in long-term care settings where most residents require staff assistance and experience complex chronic conditions, resulting in multiple communication interactions where language poses a barrier. Although there are a myriad of cultural-language translation apps and devices available, there is a gap in both research and practice on the acceptability and feasibility of these digital resources within the context of long-term care and community settings for older immigrant adults, from a cultural relevance and digital health equity perspective. Our paper outlines a scoping review protocol to examine the state of the literature on the extent to which cultural-language translation apps are used in long-term care settings and community-based elder care. We will also examine the extent to which such apps bridge or further gaps in equitable, accessible and acceptable care for older immigrant adults with limited English language proficiency. This scoping review protocol will employ an adapted five-stage framework outlined by Arksey and O'Malley guided by enhancements recommended by Levac et al and Colquhoun et al. Using the Joanna Briggs Institute's population, concept and context framework, we defined the scope of the scoping review by identifying the target population, concepts for investigation and the context within which the research is situated. We will conduct a search of the literature from 2005 to 2024 using five bibliographic databases from health sciences (Healthstar OVID, MEDLINE OVID and Cumulative Index to Nursing and Allied Health Literature (CINAHL) EBSCO), engineering (Engineering Village Elsevier) and a cross-disciplinary database (Web of Science Clarivate). The research team will adopt a critical, equity-focused approach for the scoping review by integrating Richardson et al's framework for Digital Health Equity into our analysis of the findings. This will ensure that health and social equity perspectives are integrated within our methodology and analytical lens. Our analysis will specifically examine selected studies for their engagement with health equity and their ability to address issues such as ageism, ableism and the digital divide within geriatric care. Ethics approval is not required for this scoping review as it involves secondary analysis of published works and no primary data collection involving human subjects. Findings of the review will be shared with community partners and disseminated through publications, conferences and peer-reviewed publications.

Utilizing technology for diet and exercise change in complex chronic conditions across diverse environments (U-DECIDE): feasibility randomised controlled trial

BackgroundDiet and exercise are important components of treatment for complex chronic conditions, however access to allied health support is limited. When available, support is often siloed and fragmented. Digital health incorporating patient choice may help to align health care services with preferences and goals. This study evaluated the implementation of a ubiquitously accessible patient-centred digital health diet and exercise service.MethodsU-DECIDE was a single-centre, 26-week randomised controlled trial set in kidney and liver disease clinics in a tertiary hospital in Brisbane, Australia. Participants were adults with a complex chronic condition referred for dietetic consultation with at least one feature of the metabolic syndrome. All participants received a dietary consultation, an activity monitor and usual care. Intervention participants were offered one text message per week and access to additional digital health options (increased text message frequency, nutrition app, exercise app, group-based diet and/or exercise video consultations). The primary outcome of feasibility was determined by safety (study-related serious adverse events: SRSAEs), recruitment (≥ 50% eligible patients), retention (≥ 70%), exposure uptake (≥ 75% of intervention group had greater access to health professional contact than comparator) and video consultation adherence (≥ 80% attendance). Secondary outcomes included process evaluation metrics and clinical outcomes.ResultsOf 67 participants (intervention n = 33, comparator n = 34), 37 (55%) were men, median (IQR) age was 51 (41–58) years. The most chosen digital health options were the nutrition app (n = 29, 88%) and exercise video consultations (n = 26, 79%). Only one participant chose no additional digital health options. The intervention group had no SRSAEs. The study exceeded targets for recruitment (52%), retention (81%) and exposure uptake (94%). Video consultation adherence was 42%. Engagement across digital health options was inconsistent.ConclusionsDigital health options incorporating patient choice were feasible and can be offered to people with complex chronic disease as a service model option.Trial registrationAustralia and New Zealand Trials Register: Trial Registration Number: ACTRN12620001282976. Registered 27th November 2020.

Prolonged Inotrope Use After Surgery for Congenital Heart Disease: A Common Occurrence with a High Burden of Mortality.

Outcomes in patients requiring prolonged inotropes (PI) following surgery for congenital heart disease (CHD) have not been well studied. We aimed to describe the burden of PI use in the immediate postoperative period after CHD surgery and identify risk factors for in-hospital mortality. We conducted a retrospective cohort study using the Pediatric Health Information System® (PHIS) database. Patients 0-18years with CHD who underwent cardiovascular surgery from 2010 to 2020 were included. Patients who received inotropic medications for > 7 consecutive days after surgery were in the PI group and all others in the control group. Patients who died before 7days were excluded. Multivariable mixed-effect logistic regression was used to examine risk factors for in-hospital mortality. There were 110,271 patients from 48 centers included, 10,292 in the PI group and 99,979 in the control group. In-hospital mortality was significantly higher in the PI group (24.9% vs. 4.6%, p < 0.001). Ventricular assist device use was rare (1.6%). After adjustment, odds of in-hospital mortality in the PI group was 3.5 (95% CI 3.3-3.8) times higher than in controls. Independent risk factors for in-hospital mortality were age, non-White race, class of CHD, number of complex chronic conditions, preoperative inotrope, preoperative extracorporeal membrane oxygenation, sepsis, stroke, renal failure, number of inotropes at 7days, and discharge year (p < 0.01 for all). Postoperative PI use in CHD is common and carries a considerable burden of mortality. Additional work is needed to understand which risk factors are modifiable and which patients may benefit from reintervention or advanced heart failure therapies.

Preterm birth and risk of hospitalisation for complex chronic conditions during childhood and adolescence.

To examine the relationship between preterm birth and hospitalisation for paediatric complex chronic conditions. We conducted a cohort study of 1 269 745 children born between 2006 and 2022 in Quebec, Canada. We classified preterm birth as extreme (<28 weeks), very (28-31 weeks), and moderate (32-36 weeks). The outcome was hospitalisation for complex chronic conditions, including neurologic, neuromuscular, cardiovascular, respiratory, renal, gastrointestinal, haematologic, immunologic, endocrine, and neoplastic disorders up to 16 years of age. We computed adjusted hazard ratios (HR) and 95% confidence intervals (CI) for the association between preterm birth and complex chronic conditions during 9 948 734 person-years of follow-up. Hospitalisation rates for complex chronic conditions were higher for children born preterm than at term (6.88 vs. 2.24 per 1000 person-years). Preterm birth was associated with all complex chronic conditions, especially respiratory (HR 4.64, 95% CI 4.01-5.37), cardiovascular (HR 3.68, 95% CI 3.47-3.90), and neurologic disorders (HR 3.48, 95% CI 3.21-3.77). Associations were present at all ages and for all degrees of prematurity, but were strongest with extreme prematurity. Preterm birth increases the risk of hospitalisation for complex chronic conditions up to age 16 years. Preterm children may benefit from enhanced care throughout childhood and adolescence.

Antibiotic Diversity Index: A novel metric to assess antibiotic variation among hospitalized children.

Despite nationally endorsed treatment guidelines and stewardship programs, variation and deviation from evidence-based antibiotic prescribing occur, contributing to inappropriate use and medication-related adverse events. Measures of antibiotic prescribing variability can aid in quantifying this problem but are not adequate. The objective of this study is to develop a standardized metric to quantify antibiotic prescribing variability (diversity) within and across children's hospitals, and to examine its association with outcomes. We performed a cross-sectional study of empiric antibiotic exposure among children hospitalized during 2017-2019 with one of 15 common pediatric infections using the Pediatric Health Information System database. Encounters for children with complex chronic conditions, transfers in, and birth hospitalizations were excluded. Using the Shannon-Weiner entropy index, we quantified antibiotic diversity for each infection type using the d-measure of diversity. Generalized linear mixed-effects models were used to examine the association between hospital-level antibiotic diversity and risk-adjusted length of stay and costs. A total of 79,515 hospitalizations for common pediatric infections were included. Antibiotic diversity varied within and across hospitals. Infections with low mean antibiotic diversity included appendicitis (mean diversity [mDiv] = 4.9, SD = 2.5) and deep neck space infections (mDiv = 5.9, SD = 1.9). Infections with high mean antibiotic diversity included pneumonia (mDiv = 23.4, SD = 5.6) and septicemia/bacteremia (mDiv = 28.5, SD = 12.1). There was no statistically significant association between hospital-level antibiotic diversity and risk-adjusted LOS or costs. We developed and applied a novel metric to quantify diversity in antibiotic prescribing that permits comparisons across hospitals and can be leveraged to identify high-priority areas for local and national stewardship interventions.

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

ContextLimited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). ObjectiveTo 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. MethodsRetrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across five 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. Results266 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 three 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 two 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. ConclusionIn this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life.

Analysis of genetic etiology of 234 deaths in the pediatric intensive care unit with suspected genetic diseases

Objective: To explore the genetic etiology of pediatric intensive care unit (PICU) mortality cases and summarize their clinical characteristics. Methods: This was a retrospective cohort study. The study population consisted of 234 children who died within 7 d after admitted to the PICU of Children's Hospital of Fudan University from January 2017 to December 2021. The clinical diagnoses, laboratory test results, and genetic testing results were collected. These patients were divided into the pathogenic gene variation positive (PGVP) group and the pathogenic gene variation negative (PGVN) group according to the results of genetic testing. The Mann-Whitney U test and Pearson's chi-square test or Fisher's exact probability method were used to compare the clinical characteristics between the groups. Results: A total of 234 cases were enrolled, including 139 (59.4%) males and 95 (40.6%) females. The age at death was 1.0 (0.4, 3.7) years old and the length of PICU stay was 16 (6, 33) days. There were 62 cases (26.5%) PGVP, and the mutated pathogenic genes included immune genes (23 cases (37.1%)), metabolic genes (11 cases (17.7%)), neuromuscular genes (11 cases (17.7%)), cardiovascular genes (4 cases (6.5%)), and genes of other systems (13 cases (21.0%)). The age at death in PGVP cases was significantly lower than in PGVN cases (0.6 (0.3, 1.4) vs. 1.3(0.5, 4.3) years old, Z=3.85, P<0.001). Compared with the PGVN group, the PGVP group had a higher incidence of family history and chronic complex conditions (CCC) than the PGVN group (6.5% (4/62) vs. 0.6% (1/172) and 93.5% (58/62) vs. 76.2% (131/172), χ2=8.87, P=0.018 and 0.003, respectively). Children in the PGVP group were admitted with higher incidence of severe infection, decreased consciousness or coma, moderate-to-severe anemia, thrombocytopenia, protracted diarrhea, and abnormalities in muscle strength or tone than those in the PGVN group (74.2%(46/62) vs. 45.9%(79/172), 50.0%(31/62) vs. 35.5%(61/172), 32.3%(20/62) vs. 18.0%(31/172), 21.0%(13/62) vs. 10.5%(18/172), 25.8%(16/62) vs. 4.1%(7/172), 16.1%(10/62) vs. 5.2%(9/172), χ2=14.63, 4.04, 5.41, 4.37, 24.30, 7.25, all P<0.05). Pathogenic genes that occurred more than twice included IL2RG (5 cases), SMN1 (4 cases), and SH2D1A (3 cases, including 2 single gene varients and 1 copy number varient). Conclusions: Among the deceased cases in the PICU, the main genetic causes are immune-related, metabolic, and neuromuscular genetic disorders. Critically ill children with a family history, CCC, and early features such as severe infections, decreased consciousness or coma, moderate to severe anemia, thrombocytopenia, protracted diarrhea, or abnormalities in muscle strength or tone should be closely monitored and undergo early genetic testing.