Recurrent Intensive Care Episodes and Mortality Among Children With Severe Neurologic Impairment.

Importance: Children requiring care in a pediatric intensive care unit (PICU) are known to have increased risk of subsequent mortality. Children with severe neurologic impairment (SNI)-who carry neurologic or genetic diagnoses with functional impairments and medical complexity-are frequently admitted to PICUs. Although recurrent PICU critical illness episodes (PICU-CIEs) are assumed to indicate a poor prognosis, the association between recurrent PICU-CIEs and mortality in this patient population is poorly understood. Objective: To assess the association between number of recent PICU-CIEs and survival among children with severe neurologic impairment. Design, Setting, and Participants: This population-based retrospective cohort study used health administrative data from April 1, 2002, to March 31, 2020, on 4774 children born between 2002 and 2019 with an SNI diagnosis code in an Ontario, Canada, hospital record before 16 years of age and a first PICU-CIE from 2002 to 2019. Data were analyzed from November 2021 to June 2023. Exposure: Pediatric intensive care unit critical illness episodes (excluding brief postoperative PICU admissions). Main Outcome and Measures: One-year survival conditioned on the number and severity (length of stay >15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year. Results: In Ontario, 4774 children with SNI (mean [SD] age, 2.1 [3.6] months; 2636 [55.2%] <1 year of age; 2613 boys [54.7%]) were discharged alive between 2002 and 2019 after their first PICU-CIE. Ten-year survival after the initial episode was 81% (95% CI, 79%-82%) for children younger than 1 year of age and 84% (95% CI, 82%-86%) for children 1 year of age or older; the age-stratified curves converged by 15 years after the initial episode at 79% survival (95% CI, 78%-81% for children <1 year and 95% CI, 75%-84% for children ≥1 year). Adjusted for age category and demographic factors, the presence of nonneurologic complex chronic conditions (adjusted hazard ratio [AHR], 1.70 [95% CI, 1.43-2.02]) and medical technology assistance (AHR, 2.32 [95% CI, 1.92-2.81]) were associated with increased mortality. Conditional 1-year mortality was less than 20% regardless of number or severity of recent PICU-CIEs. Among children with high-risk PICU-CIEs, 1-year conditional survival decreased from 90% (95% CI, 89%-91%) after the first PICU-CIE to 81% (95% CI, 77%-86%) after the fourth PICU-CIE. Conclusions and Relevance: This cohort study of children with SNI demonstrated a modest dose-dependent association between PICU-CIEs and short-term mortality. These data did not support the conventional wisdom that recurrent PICU admissions are associated with subsequent high mortality risk.

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment.

OBJECTIVE: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. STUDY DESIGN: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. RESULTS: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. CONCLUSIONS: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.

Characteristics of Pediatric Hospital Medicine Fellowship Program Directors.

BACKGROUND AND OBJECTIVES: Rapid growth in pediatric hospital medicine (PHM) fellowships has occurred, yielding many new program directors (PDs). Characteristics of PDs have potential implications on the field. To describe characteristics (demographic, educational) and scholarly interests of PHM fellowship PDs. METHODS: We developed and distributed a 15-question, cross-sectional national survey to the PHM PDs listserv. Questions were pilot tested. The survey was open for 4 weeks with weekly reminders. Responses were summarized using descriptive statistics. RESULTS: Fifty-six current fellowship leaders (40 PDs, 16 associate PDs [APDs]) responded, including at least 1 from 43 of 59 active PHM fellowship programs (73%). Most respondents identified as female (71%) and ≤50 years old (80%). Four (7%, n = 2 PD, 2 APD) leaders identified as underrepresented in medicine. About half (n = 31, 55.4%) completed a fellowship themselves (APDs > PDs; 87.5% vs 42.5%), and 53.5% (n = 30) had advanced nonmedical degrees (eg, Master of Science, Doctor of Philosophy; APDs > PDs; 62% vs 45%). Most leaders (59%, n = 33) chose multiple domains when asked to select a "primary domain of personal scholarship." Education was the most frequently selected (n = 37), followed by quality improvement (n = 29) and then clinical research (n = 19). CONCLUSIONS: This survey confirms a high percentage of women as PHM fellowship leaders and highlights the need to increase diversity. Less than half of senior PDs completed a fellowship in any specialty. Leaders report interest in multiple domains of scholarship; few focus solely on clinical research.

Determining the feasibility of calculating pancreatic cancer risk scores for people with new-onset diabetes in primary care (DEFEND PRIME): study protocol.

INTRODUCTION: Worldwide, pancreatic cancer has a poor prognosis. Early diagnosis may improve survival by enabling curative treatment. Statistical and machine learning diagnostic prediction models using risk factors such as patient demographics and blood tests are being developed for clinical use to improve early diagnosis. One example is the Enriching New-onset Diabetes for Pancreatic Cancer (ENDPAC) model, which employs patients' age, blood glucose and weight changes to provide pancreatic cancer risk scores. These values are routinely collected in primary care in the UK. Primary care's central role in cancer diagnosis makes it an ideal setting to implement ENDPAC but it has yet to be used in clinical settings. This study aims to determine the feasibility of applying ENDPAC to data held by UK primary care practices. METHODS AND ANALYSIS: This will be a multicentre observational study with a cohort design, determining the feasibility of applying ENDPAC in UK primary care. We will develop software to search, extract and process anonymised data from 20 primary care providers' electronic patient record management systems on participants aged 50+ years, with a glycated haemoglobin (HbA1c) test result of ≥48 mmol/mol (6.5%) and no previous abnormal HbA1c results. Software to calculate ENDPAC scores will be developed, and descriptive statistics used to summarise the cohort's demographics and assess data quality. Findings will inform the development of a future UK clinical trial to test ENDPAC's effectiveness for the early detection of pancreatic cancer. ETHICS AND DISSEMINATION: This project has been reviewed by the University of Surrey University Ethics Committee and received a favourable ethical opinion (FHMS 22-23151 EGA). Study findings will be presented at scientific meetings and published in international peer-reviewed journals. Participating primary care practices, clinical leads and policy makers will be provided with summaries of the findings.

Development of Scholarship Core Competencies for Pediatric Hospital Medicine Fellowship Programs.

The Pediatric Hospital Medicine (PHM) Fellowship Directors, recent fellowship graduates, and senior leaders in PHM have long identified training in scholarly activities as a key educational priority for fellowship training programs. We led a 2-day conference funded by the Agency for Healthcare Research and Quality to develop scholarship core competencies for PHM fellows. Participants included fellowship directors, national experts in PHM research, and representatives from key stakeholder organizations. Through engagement in large group presentations and small group iterative feedback and editing, participants created and refined a set of scholarship core competencies. After the conference, goals and objectives were edited and harmonized by conference leaders incorporating feedback from conference participants. Core competency development included 7 domains: (1) study design and execution, (2) data management, (3) principles of analytics, (4) critical appraisal of the medical literature, (5) ethics and responsible conduct of research, (6) peer review, dissemination, and funding, and (7) professionalism and leadership. Specific objectives for each goal were further organized into 3 levels to indicate core skills for all fellowship trainees (level 1), specialized and specific skills determined by fellow scholarly focus (level 2), and advanced skills for fellows interested in a clinical investigator career path (level 3). These newly developed scholarship core competencies provide a foundation for curricular development and implementation to ensure that the field continues to expand academically, given the 2-year training period and variable infrastructure across programs.

Disparities in the Diagnosis and Management of Infants Hospitalized With Inadequate Weight Gain.

OBJECTIVES: To evaluate the association between race and the named etiology for inadequate weight gain among hospitalized infants and assess the differences in management. METHODS: This single-center retrospective cohort study of infants hospitalized for the workup and management of inadequate weight gain used infant race and neighborhood-level socioeconomic deprivation as exposures. The etiology of inadequate weight gain was categorized as nonorganic, subjective organic (ie, gastroesophageal reflux and cow's milk protein intolerance), or objective organic (eg, hypothyroidism). The management of inadequate weight gain was examined in secondary outcomes. RESULTS: Among 380 infants, most were white and had a nonorganic etiology of inadequate weight gain. Black infants had 2.3 times higher unadjusted odds (95% credible interval [CI] 1.17-4.76) of a nonorganic etiology of inadequate weight gain compared with white infants. After adjustment, there was no association between race and etiology (adjusted odds ratio 0.8, 95% CI [0.44-2.08]); however, each 0.1 increase in neighborhood-level deprivation was associated with 80% increased adjusted odds of a nonorganic etiology of inadequate weight gain (95% CI [1.37-2.4]). Infants with a nonorganic etiology of inadequate weight gain were more likely to have social work and child protective service involvement and less likely to have nasogastric tube placement, gastroenterology consults, and speech therapy consults. CONCLUSIONS: Infants from neighborhoods with greater socioeconomic deprivation were more likely to have nonorganic causes of inadequate weight gain, disproportionately affecting infants of Black race. A nonorganic etiology was associated with a higher likelihood of social interventions and a lower likelihood of medical interventions.

Respiratory culture growth and 3-years lung health outcomes in children with bronchopulmonary dysplasia and tracheostomies.

BACKGROUND: While bacteria identification on respiratory cultures is associated with poor short-term outcomes in children with bronchopulmonary dysplasia (BPD) and tracheostomies, the influence on longer-term respiratory support needs remains unknown. OBJECTIVE: To determine if respiratory culture growth of pathogenic organisms is associated with ongoing need for respiratory support, decannulation, and death at 3 years posttracheostomy placement in children with BPD and tracheostomies. METHODS: This single center, retrospective cohort study included infants and children with BPD and tracheostomies placed 2010-2018 and ≥1 respiratory culture obtained in 36 months posttracheostomy. Primary predictor was any pathogen identified on respiratory culture. Additional predictors were any Pseudomonas aeruginosa and chronic P. aeruginosa identification. Outcomes included continued use of respiratory support (e.g., oxygen, positive pressure), decannulation, and death at 3 years posttracheostomy. We used Poisson regression models to examine the relationship between respiratory organisms and outcomes, controlling for patient-level covariates and within-patient clustering. RESULTS: Among 170 children, 59.4% had a pathogen identified, 28.8% ever had P. aeruginosa, and 3.5% had chronic P. aeruginosa. At 3 years, 33.1% of alive children required ongoing respiratory support and 24.8% achieved decannulation; 18.9% were deceased. In adjusted analysis, any pathogen and P. aeruginosa were not associated with ongoing respiratory support or mortality. However, P. aeruginosa was associated with decreased decannulation probability (adjusted risk ratio 0.48, 95% CI 0.23-0.98). Chronic P. aeruginosa was associated with lower survival probability. CONCLUSION: Our findings suggest that respiratory pathogens including P. aeruginosa may not promote long-term respiratory dysfunction, but identification of P. aeruginosa may delay decannulation.

Garnering effective telehealth to help optimize multidisciplinary team engagement (GET2HOME) for children with medical complexity: Protocol for a pragmatic randomized control trial.

BACKGROUND: Children and young adults with medical complexity (CMC) experience high rates of healthcare reutilization following hospital discharge. Prior studies have identified common hospital-to-home transition failures that may increase the risk for reutilization, including medication, technology and equipment issues, financial concerns, and confusion about which providers can help with posthospitalization needs. Few interventions have been developed and evaluated for CMC during this transition period. OBJECTIVE: We will compare the effectiveness of the garnering effective telehealth 2 help optimize multidisciplinary team engagement (GET2HOME) transition bundle intervention to the standard hospital-based care coordination discharge process by assessing healthcare reutilization and patient- and family-centered outcomes. DESIGNS, SETTINGS, AND PARTICIPANTS: We will conduct a pragmatic 2-arm randomized controlled trial (RCT) comparing the GET2HOME bundle intervention to the standard hospital-based care discharge process on CMC hospitalized and discharged from hospital medicine at two sites of our pediatric medical center between November 2022 and February 2025. CMC of any age will be identified as having complex chronic disease using the Pediatric Medical Complexity Algorithm tool. We will exclude CMC who live independently, live in skilled nursing facilities, are in custody of the county, or are hospitalized for suicidal ideation or end-of-life care. INTERVENTION: We will randomize participants to the bundle intervention or standard hospital-based care coordination discharge process. The bundle intervention includes (1) predischarge telehealth huddle with inpatient providers, outpatient providers, patients, and their families; (2) care management discharge task tracker; and (3) postdischarge telehealth huddle with similar participants within 7 days of discharge. As part of the pragmatic design, families will choose if they want to complete the postdischarge huddle. The standard hospital-based discharge process includes a pharmacist, social worker, and care management support when consulted by the inpatient team but does not include huddles between providers and families. MAIN OUTCOME AND MEASURES: Primary outcome will be 30-day urgent healthcare reutilization (unplanned readmission, emergency department, and urgent care visits). Secondary outcomes include 7-day urgent healthcare reutilization, patient- and family-reported transition quality, quality of life, and time to return to baseline using electronic health record and surveys at 7, 30, 60, and 90 days following discharge. We will also evaluate heterogeneity of treatment effect for the intervention across levels of financial strain and for CMC with high-intensity neurologic impairment. The primary analysis will follow the intention-to-treat principle with logistic regression used to study reutilization outcomes and generalized linear mixed modeling to study repeated measures of patient- and family-reported outcomes over time. RESULTS: This pragmatic RCT is designed to evaluate the effectiveness of enhanced discharge transition support, including telehealth huddles and a care management discharge tool, for CMC and their families. Enrollment began in November 2022 and is projected to complete in February 2025. Primary analysis completion is anticipated in July 2025 with reporting of results following.

Respiratory culture organism isolation and test characteristics in children with tracheostomies with and without acute respiratory infection.

BACKGROUND: Among children with tracheostomies, little is known about how respiratory culture results differ between states with and without acute respiratory infections (ARI), or the overall test performance of respiratory cultures. OBJECTIVE: To determine the association of respiratory culture organism isolation with diagnosis of ARI in children with tracheostomies, and assess test characteristics of respiratory cultures in the diagnosis of bacterial ARI (bARI). METHODS: This single-center, retrospective cohort study included respiratory cultures of children with tracheostomies obtained between 2010 and 2018. The primary predictor was ARI diagnosis code at the time of culture; the primary outcomes were respiratory culture organism isolation and species identified. Generalized estimating equations were used to assess for association between ARI diagnosis and isolation of any organism while controlling for potential confounders and accounting for within-patient clustering. A multinomial logistic regression equation assessed for association with specific species. Test characteristics were calculated using bARI diagnosis as the reference standard. RESULTS: Among 3578 respiratory cultures from 533 children (median 4 cultures/child, interquartile range (IQR): 1-9), 25.9% were obtained during ARI and 17.2% had ≥1 organism. Children with ARI diagnosis had higher odds of organism identification (adjusted odds ratio 1.29, 95%  confidence interval [CI] 1.16-1.44). When controlling for covariates, ARI was associated with isolation of Haemophilus influenzae, Moraxella catarrhalis, Streptococcus pneumoniae, and Streptococcus pyogenes. Test characteristics revealed a 24.3% sensitivity, 85.2% specificity, 36.5% positive predictive value, and 76.3% negative predictive value in screening for bARI. CONCLUSION: The utility of respiratory culture testing to screen for, diagnose, and direct treatment of ARI in children with tracheostomies is limited.

Impact of the COVID-19 pandemic on hospitalizations of children with neurologic impairment.

INTRODUCTION: Children with neurologic impairment (NI) are frequently hospitalized for infectious and noninfectious illnesses. The early period of the COVID-19 pandemic was associated with overall lower pediatric hospitalization rates, particularly for respiratory infections, but the effect on utilization for children with NI is unknown. METHOD: This multicenter retrospective cohort study included hospitalizations of children 1-18 years of age with NI diagnosis codes from 49 children's hospitals. We calculated the percent change in the median weekly hospitalization volumes and the hospitalization resource intensity score (H-RISK), comparing the early-COVID era (March 15, 2020 to December 31, 2020) with the pre-COVID era (same timeframe of 2017-2019). Percent change was calculated over the entire study period as well as within three seasonal time periods (spring, summer, and fall/winter). Differences between infectious and noninfectious admission diagnoses were also examined. RESULTS: Compared with the pre-COVID era, there was a 14.4% decrease (interquartile range [IQR]: -33.8, -11.7) in the weekly median number of hospitalizations in the early-COVID era; the weekly median H-RISK score was 11.7% greater (IQR: 8.9, 14.9). Hospitalizations decreased for both noninfectious (-11.6%, IQR: -30.0, -8.0) and infectious (-35.5%, IQR: -51.1, -31.3) illnesses in the early-COVID era. This decrease was the largest in spring 2020 and continued throughout 2020. CONCLUSIONS: For children with NI, there was a substantial and significant decrease in hospitalizations for infectious and noninfectious diagnoses but an increase in illness severity during the early-COVID era compared with the pre-COVID era. Our data suggest a need to reconsider current thresholds for hospitalization and identify opportunities to support and guide families through certain illnesses without hospitalization.

Clinical characteristics of children with severe neurologic impairment: A scoping review.

OBJECTIVE: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies. METHODS: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subjects <19 years of age with >1 neurologic diagnosis and severe functional limitation) using data from caregivers, medical charts, or prospective collection. Studies that were not written in English were excluded. We extracted data about functional characteristics, comorbidities, and study topics. RESULTS: We included 102 studies, spanning 5 continents over 43 years, using 41 distinct terms for SNI. The terms SNI and neurologic impairment (NI) were used in 59 studies (58%). Most studies (n = 81, 79%) described ≥3 types of functional characteristics, such as technology assistance and motor impairment. Studies noted 59 comorbidities and surgeries across 10 categories. The most common comorbidities were related to feeding, nutrition, and the gastrointestinal system, which were described in 79 studies (77%). Most comorbidities (76%) were noted in <10 studies. Studies investigated seven clinical topics, with "Gastrointestinal reflux and feeding tubes" as the most common research focus (n = 57, 56%). The next most common topic, "Aspiration and respiratory issues," included 13 studies (13%). Most studies (n = 54, 53%) were retrospective cohorts or case series; there were no clinical trials. CONCLUSIONS: Despite the breadth of described comorbidities, studies focused on a narrow set of clinical topics. Further research is required to understand the prevalence, clinical impact, and interaction of the multiple comorbidities that are common in children with SNI.

Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions.

OBJECTIVE: Ear, nose, throat, and respiratory infections (ENTRI) may affect children with complex chronic conditions (CCC) differently than their peers. We compared ENTRI prevalence and spending in children with and without CCCs. METHODS: Retrospective analysis of 3,880,456 children ages 0-to-18 years enrolled in 9 US state Medicaid programs in 2018 contained in the IBM Watson Marketscan Database. Type and number of CCCs were distinguished with Feudtner's system. ENTRI prevalence, defined as ≥1 healthcare encounters for ENTRI, and Medicaid spending on ENTRI were compared by CCC using chi-square tests and logistic regression. RESULTS: ENTRIs were greater in children with vs. without a CCC (57.7% vs 43.5% [P < .001]). Children with a CCC (5.5%, n = 213,425) accounted for nearly one-fourth ($145.8 million [US]) of total spending on ENTRI. Aside from throat and sinus infection, ENTRI prevalence increased with number of CCCs (P < .001). For example, as number of CCCs increased from zero to ≥3, lower-airway infection increased from 12.5% to 37.5%, P < .001 (OR 4.10; 95% CI 3.95-4.26). ENTRI spending attributable to inpatient care increased from 9.7% to 92.8% (P < .001) as the number of CCCs increased from zero to ≥3. CONCLUSION: Most children with a CCC pursued care for ENTRI in 2018 and these children accounted for a disproportionate share of ENTRI spending. Children with multiple CCCs had a high prevalence of lower-airway infection; most of their ENTRI spending was for inpatient care. Providers can use these findings to counsel patients and families and to inform future investigations on how best to manage ENTRI in children with CCCs.

Comprehensiveness of Testing Among Herpes Simplex Virus Infected Infants: A Multicenter Cohort Study.

Despite clear testing recommendations for herpes simplex virus (HSV) infection in infants, few data exist on the comprehensiveness of HSV testing in practice. In a 23-center study of 112 infants with confirmed HSV disease, less than one-fifth had all recommended testing performed, highlighting the need for increased awareness of and adherence to testing recommendations for this vulnerable population.

Child Opportunity Index 2.0 and acute care utilization among children with medical complexity.

BACKGROUND: Disproportionately high acute care utilization among children with medical complexity (CMC) is influenced by patient-level social complexity. OBJECTIVE: The objective of this study was to determine associations between ZIP code-level opportunity and acute care utilization among CMC. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional, multicenter study used the Pediatric Health Information Systems database, identifying encounters between 2016-2019. CMC aged 28 days to <16 years with an initial emergency department (ED) encounter or inpatient/observation admission in 2016 were included in primary analyses. MAIN OUTCOME AND MEASURES: We assessed associations between the nationally-normed, multi-dimensional, ZIP code-level Child Opportunity Index 2.0 (COI) (high COI = greater opportunity), and total utilization days (hospital bed-days + ED discharge encounters). Analyses were conducted using negative binomial generalized estimating equations, adjusting for age and distance from hospital and clustered by hospital. Secondary outcomes included intensive care unit (ICU) days and cost of care. RESULTS: A total of 23,197 CMC were included in primary analyses. In unadjusted analyses, utilization days decreased in a stepwise fashion from 47.1 (95% confidence interval: 45.5, 48.7) days in the lowest COI quintile to 38.6 (36.9, 40.4) days in the highest quintile (p < .001). The same trend was present across all outcome measures, though was not significant for ICU days. In adjusted analyses, patients from the lowest COI quintile utilized care at 1.22-times the rate of those from the highest COI quintile (1.17, 1.27). CONCLUSIONS: CMC from low opportunity ZIP codes utilize more acute care. They may benefit from hospital and community-based interventions aimed at equitably improving child health outcomes.

Neighborhood Socioeconomic Deprivation and Health Care Utilization of Medically Complex Children.

OBJECTIVES: To assess the association between neighborhood socioeconomic deprivation and health care utilization in a cohort of children with medical complexity (CMC). METHODS: Cross-sectional study of children aged <18 years receiving care in our institution's patient-centered medical home (PCMH) for CMC in 2016 to 2017. Home addresses were assigned to census tracts and a tract-level measure of socioeconomic deprivation (Deprivation Index with range 0-1, higher numbers represent greater deprivation). Health care utilization outcomes included emergency department visits, hospitalizations, inpatient bed days, and missed PCMH clinic appointments. To evaluate the independent association between area-level socioeconomic deprivation and utilization outcomes, multivariable Poisson and linear regression models were used to control for demographic and clinical covariates. RESULTS: The 512 included CMC lived in neighborhoods with varying degrees of socioeconomic deprivation (median 0.32, interquartile range 0.26-0.42, full range 0.12-0.82). There was no association between area-level deprivation and emergency department visits (adjusted risk ratio [aRR] 0.98; 95% confidence interval [CI]: 0.93 to 1.04), hospitalizations (aRR 0.97; 95% CI: 0.92 to 1.01), or inpatient bed-days (aRR 1.00, 95% CI: 0.80 to 1.27). However, there was a 13% relative increase in the missed clinic visit rate for every 0.1 unit increase in Deprivation Index (95% CI: 8%-18%). CONCLUSIONS: A child's socioeconomic context is associated with their adherence to PCMH visits. Our PCMH for CMC includes children living in neighborhoods with a range of socioeconomic deprivation and may blunt effects from harmful social determinants. Incorporating knowledge of the socioeconomic context of where CMC and their families live is crucial to ensure equitable health outcomes.

Research priorities for children with neurological impairment and medical complexity in high-income countries.

AIM: To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers. METHOD: A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list. RESULTS: A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions. INTERPRETATION: Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers.

Validation of Neurologic Impairment Diagnosis Codes as Signifying Documented Functional Impairment in Hospitalized Children.

OBJECTIVE: To assess the performance of previously published high-intensity neurologic impairment (NI) diagnosis codes in identification of hospitalized children with clinical NI. METHODS: Retrospective study of 500 randomly selected discharges in 2019 from a freestanding children's hospital. All charts were reviewed for 1) NI discharge diagnosis codes and 2) documentation of clinical NI (a neurologic diagnosis and indication of functional impairment like medical technology). Test statistics of clinical NI were calculated for discharges with and without an NI diagnosis code. A sensitivity analysis varied the threshold for "substantial functional impairment." Secondary analyses evaluated misclassified discharges and a more stringent definition for NI. RESULTS: Diagnosis codes identified clinically documented NI with 88.1% (95% confidence interval [CI]: 84.7, 91) specificity, and 79.4% (95% CI: 67.3, 88.5) sensitivity; negative predictive value (NPV) was 96.7% (95% CI: 94.8, 98.0), and positive predictive value (PPV) was 49% (95% CI: 42, 56.1). Including children with milder functional impairment (lower threshold) resulted in NPV of 95.7% and PPV of 77.5%. Restricting to children with more severe functional impairment (higher threshold) resulted in NPV of 98.2% and PPV of 44.1%. Misclassification was primarily due to inclusion of children without functional impairments. A more stringent NI definition including diagnosis codes for NI and feeding tubes had a specificity of 98.4% (95% CI: 96.7-99.3) and sensitivity of 28.6% (19.4-41.3). CONCLUSIONS: All scenarios evaluated demonstrated high NPV and low-to-moderate PPV of the diagnostic code list. To maximize clinical utility, NI diagnosis codes should be used with strategies to mitigate the risk of misclassification.