Ventilator Weaning and Terminal Extubation: Withdrawal of Life-Sustaining Therapy in Children. Secondary Analysis of the Death One Hour After Terminal Extubation Study.

OBJECTIVE: Terminal extubation (TE) and terminal weaning (TW) during withdrawal of life-sustaining therapies (WLSTs) have been described and defined in adults. The recent Death One Hour After Terminal Extubation study aimed to validate a model developed to predict whether a child would die within 1 hour after discontinuation of mechanical ventilation for WLST. Although TW has not been described in children, pre-extubation weaning has been known to occur before WLST, though to what extent is unknown. In this preplanned secondary analysis, we aim to describe/define TE and pre-extubation weaning (PW) in children and compare characteristics of patients who had ventilatory support decreased before WLST with those who did not. DESIGN: Secondary analysis of multicenter retrospective cohort study. SETTING: Ten PICUs in the United States between 2009 and 2021. PATIENTS: Nine hundred thirteen patients 0-21 years old who died after WLST. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: 71.4% ( n = 652) had TE without decrease in ventilatory support in the 6 hours prior. TE without decrease in ventilatory support in the 6 hours prior = 71.4% ( n = 652) of our sample. Clinically relevant decrease in ventilatory support before WLST = 11% ( n = 100), and 17.6% ( n = 161) had likely incidental decrease in ventilatory support before WLST. Relevant ventilator parameters decreased were F io2 and/or ventilator set rates. There were no significant differences in any of the other evaluated patient characteristics between groups (weight, body mass index, unit type, primary diagnostic category, presence of coma, time to death after WLST, analgosedative requirements, postextubation respiratory support modality). CONCLUSIONS: Decreasing ventilatory support before WLST with extubation in children does occur. This practice was not associated with significant differences in palliative analgosedation doses or time to death after extubation.

Race, ethnicity and patient-reported outcomes in childhood-onset systemic lupus erythematosus.

OBJECTIVES: This study assesses the association of race/ethnicity with the Patient-Reported Outcomes Measurement Information System (PROMIS®) in childhood-onset systemic lupus erythematosus (cSLE) patients from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. METHODS: cSLE patients enrolled in the CARRA Registry within two years of cSLE diagnosis who met ACR and/or SLICC classification criteria for lupus were included. Baseline demographics, laboratory, and disease features as well as patient-reported outcomes were obtained. Multivariable linear regression analysis was used to examine the association of race and ethnicity with PROMIS scores at registry enrolment. RESULTS: 425 cSLE patients met inclusion criteria: 83.8% were female, 30.6% non-Hispanic White, 29.7% Black, 22.1% Hispanic. The mean age at diagnosis was 13.9 years (SD 2.5). Household income and highest parental education varied by race/ethnic group, as did frequency of rash, leukopenia, and anti-Smith antibodies. The cohort had low-moderate baseline disease activity (SLEDAI mean: 6.0 [SD 6.7]). The overall PROMIS Global Health mean T-score was 38.6 (SD 6.5), more than one standard deviation below the general population mean of 50. There was no association between race/ethnicity and PROMIS scores in multivariable linear regression analysis. CONCLUSIONS: In this multiethnic paediatric lupus cohort, PROMIS global health was lower when compared with the general paediatric US population. Moreover, PROMIS global health, pain interference, and physical function mobility did not vary across races/ethnicities.

Type 1 Diabetes Continuous Glucose Monitoring Use in the Pediatric Emergency Department Affects Laboratory Test Frequency but Not Treatment Timing.

Regular use of continuous glucose monitoring (CGM) in type 1 diabetes management increases the achievement of glycemic targets and reduces health care utilization, specifically emergency department (ED) visits. This retrospective chart review examined the effects of CGM use in patients with type 1 diabetes in a pediatric ED. Use of CGM was associated with several differences in patient management in the ED. This work is a first step toward development of guidelines for the appropriate use of CGM in the pediatric ED. In the future, CGM use in type 1 diabetes may lead to reduced ED-specific health care costs.

Using Peer Power to Reduce Health Disparities: Implementation of a Diabetes Support Coach Program in Federally Qualified Health Centers.

Community health workers (CHWs) provide vital support to underserved communities in the promotion of health equity by addressing barriers related to the social determinants of health that often prevent people living with diabetes from achieving optimal health outcomes. Peer support programs in diabetes can also offer people living with diabetes invaluable support through a shared understanding of the disease and by offsetting diabetes-related stigma. As part of a Project Extension for Community Healthcare Outcomes (ECHO) Diabetes program, participating federally qualified healthcare centers were provided diabetes support coaches (DSCs) to facilitate patient engagement. DSCs hold invaluable expert knowledge, as they live with diabetes themselves and reside in areas they serve, thus combining the CHW role with peer support models. The use of DSCs and CHWs during the coronavirus disease 2019 pandemic and beyond is highly effective at reaching underserved communities with diabetes and promoting health equity.

Routine Early Antibiotic Use in SymptOmatic Preterm Neonates: A Pilot Randomized Controlled Trial.

We enrolled 98 infants (gestational age <33 weeks) in a pilot randomized trial of antibiotics vs no antibiotics; 55 were randomized (lower maternal infectious risk; symptoms expected for gestation). Adverse events did not differ significantly between the randomization arms. This trial establishes a framework for a larger multicentered trial.

Phenotypic implications of pathogenic variant types in Pompe disease.

Newborn screening and therapies for Pompe disease (glycogen storage disease type II, acid maltase deficiency) will continue to expand in the future. It is thus important to determine whether enzyme activity or type of pathogenic genetic variant in GAA can best predict phenotypic severity, particularly the presence of infantile-onset Pompe disease (IOPD) versus late-onset Pompe disease (LOPD). We performed a retrospective analysis of 23 participants with genetically-confirmed cases of Pompe disease. The following data were collected: clinical details including presence or absence of cardiomyopathy, enzyme activity levels, and features of GAA variants including exon versus intron location and splice site versus non-splice site. Several combinations of GAA variant types for individual participants had significant associations with disease subtype, cardiomyopathy, age at diagnosis, gross motor function scale (GMFS), and stability of body weight. The presence of at least one splice site variant (c.546 G > C/p.T182 = , c.1076-22 T > G, c.2646 + 2 T > A, and the classic c.-32-13T > G variant) was associated with LOPD, while the presence of non-splice site variants on both alleles was associated with IOPD. Enzyme activity levels in isolation were not sufficient to predict disease subtype or other major clinical features. To extend the findings of prior studies, we found that multiple types of splice site variants beyond the classic c.-32-13T > G variant are often associated with a milder phenotype. Enzyme activity levels continue to have utility for supporting the diagnosis when the genetic variants are ambiguous. It is important for newly diagnosed patients with Pompe disease to have complete genetic, cardiac, and neurological evaluations.

Barriers to retinopathy screening in youth and young adults with type 1 diabetes.

Early detection of diabetic retinopathy (DR) is imperative; however, adherence to screening guidelines is poor. We hypothesized that youth and young adults with type 1 diabetes (T1D) who met American Diabetes Association criteria for recommended DR screening at the time of the study (10 years old or greater with diabetes duration of 5 years or more) would report multiple barriers to screening and that targeted barriers and subpopulations could be identified to improve access to care. 271 youth aged 10 to 26 years with T1D of at least 5 years duration were recruited from clinic, diabetes camp, and a diabetes conference and completed a patient-reported questionnaire. 113 (41.7%) reported at least one barrier to DR screening, with missed school and work being the most common (20.7%). Older participants (P = 0.007) and those with a longer diabetes duration (P = 0.018) were more likely to report barriers to screening. Recruitment location, sex, race and ethnicity, HbA1c, insulin regimen, and clinic visit frequency were not associated with reporting at least one barrier. Slightly less than two-thirds (62.1%) of participants who responded (n = 235 out of 271) adhered to recommended screening guidelines of the time and reported having an eye exam within the past year, 24.7% 12-23 months ago, 9.8% 2 years ago or more, and 3.4% had never had a DR exam. As older patients and those with longer duration of diabetes are more likely to have DR, targeted interventions to address barriers to care, such as, missed school and work should be implemented in these groups.

Real-World Screening for Retinopathy in Youth With Type 1 Diabetes Using a Nonmydriatic Fundus Camera.

OBJECTIVE: To assess the use of a portable retinal camera in diabetic retinopathy (DR) screening in multiple settings and the presence of associated risk factors among children, adolescents, and young adults with type 1 diabetes. DESIGN AND METHODS: Five hundred youth with type 1 diabetes of at least 1 year's duration were recruited from clinics, diabetes camp, and a diabetes conference and underwent retinal imaging using a nonmydriatic fundus camera. Retinal characterization was performed remotely by a licensed ophthalmologist. Risk factors for DR development were evaluated by a patient-reported questionnaire and medical chart review. RESULTS: Of the 500 recruited subjects aged 9-26 years (mean 14.9, SD 3.8), 10 cases of DR were identified (nine mild and one moderate nonproliferative DR) with 100% of images of gradable quality. The prevalence of DR was 2.04% (95% CI 0.78-3.29), at an average age of 20.2 years, with the youngest affected subject being 17.1 years of age. The rate of DR was higher, at 6.5%, with diabetes duration >10 years (95% CI 0.86-12.12, P = 0.0002). In subjects with DR, the average duration of diabetes was 12.1 years (SD 4.6, range 6.2-20.0), and in a subgroup of clinic-only subjects (n = 114), elevated blood pressure in the year before screening was associated with DR (P = 0.0068). CONCLUSION: This study in a large cohort of subjects with type 1 diabetes demonstrates that older adolescents and young adults (>17 years) with longer disease duration (>6 years) are at risk for DR development, and screening using a portable retinal camera is feasible in clinics and other locations. Recent elevated blood pressure was a risk factor in an analyzed subgroup.

Risk of Ischemic Stroke Increases Over the Spectrum of Metabolic Syndrome Severity.

BACKGROUND AND PURPOSE: Ischemic stroke is associated with the metabolic syndrome (MetS) as diagnosed using dichotomous criteria; however, these criteria exhibit racial/ethnic discrepancies. Our goal was to assess whether ischemic stroke risk extended over the spectrum of worsening MetS severity using a sex- and race/ethnicity-specific MetS-severity Z score. METHODS: We used Cox-proportional hazards models to assess the relationship between baseline MetS-Z score and incident ischemic stroke among participants of the Atherosclerosis Risk in Communities study and Jackson Heart Study who were free from diabetes, coronary heart disease or stroke at baseline, evaluating 13 141 white and black individuals with mean follow-up of 18.6 years. RESULTS: We found that risk of ischemic stroke increased consistently with MetS severity, with a hazard ratio of 1.75 (95% CI, 1.35-2.27) for those >75th percentile compared to those <25th percentile. This risk was highest for white females (hazard ratio, 2.63 [CI, 1.70-4.07]) though without significant interaction by sex and race. Relationships between stroke and all the individual components of MetS were only noted for white females, though again without sex-race interactions. Hazard ratio's for systolic blood pressure and stroke were significant among all sex/racial subgroups. CONCLUSIONS: Ischemic stroke risk increased over the spectrum of MetS severity in the absence of baseline diabetes mellitus, further implicating potential etiologic risks from processes underlying MetS. Individuals with elevated MetS severity should be counselled toward lifestyle modification to lower ischemic stroke risk.

Specific adverse childhood experiences and their association with other adverse childhood experiences, asthma and emotional, developmental and behavioral problems in childhood.

BACKGROUND: Adverse childhood experiences (ACEs) have lifelong health consequences, yet screening remains challenging. Particularly in clinical settings, brief screeners that could lead to comprehensive assessments may be more feasible. We explore how two ACEs (economic hardship, parental/caregiver divorce/separation) are associated with other ACEs, asthma, and emotional, developmental, or behavioral (EDB) problems. METHODS: Using the 2016 National Survey of Children's Health, we assessed the associations between ACEs and asthma and EDB problems and calculated sensitivities, specificities and predictive values. RESULTS: Parents frequently reported 1+ ACEs for their child (50.3%). Individual ACE frequency ranged from 4.2 to 29.6%; all were significantly associated with EDB problems (adjusted odds ratios (aORs): 2.2-5.1) and more ACEs confirmed higher odds. Two ACES (economic hardship, parental/caregiver divorce/separation) co-occurred frequently with other ACEs, having either predicted EDB problems similarly to other ACEs (aORs 1.8; 95% CI 1.4, 2.3) and having both greatly increased odds (aOR 3.8; 95% CI 2.8, 5.2). The negative predictive value of EDB problems associated with citing neither ACE was high (95.7%). Similar trends with asthma were observed. CONCLUSIONS: Economic hardship and caregiver separation are strongly associated with other ACEs, EDB problems and asthma. A brief screener including these ACEs may reduce clinical barriers to broader ACEs screening.

Associations of a metabolic syndrome severity score with coronary heart disease and diabetes in fasting vs. non-fasting individuals.

BACKGROUND AND AIMS: Many traditional assessments of risk for coronary heart disease (CHD) and diabetes require laboratory studies performed after an 8-h fast. We assessed whether metabolic-syndrome (MetS) severity would remain linked to future CHD and diabetes even when assessed from non-fasting samples. METHODS AND RESULTS: Participants in the Atherosclerosis Risk in Communities study were assessed at 4 visits and followed for 20-years of adjudicated CHD outcomes. We used Cox proportional-hazard models (for 20-year CHD outcomes) and logistic regression (for 9-year diabetes outcomes) to compare incident disease risk associated with a race/ethnicity-specific MetS-severity Z-score (MetS-Z) calculated in participants who were fasting (≥8 h) or non-fasting. All analyses were adjusted for sex, race, education, income and smoking. MetS Z-scores were overall similar between participants who were always fasting vs. those non-fasting at Visits 1-3 (all values -0.1 to 0.4), while MetS-Z for participants who were non-fasting at Visit-4 were higher at each visit. Baseline MetS-Z was linked to future CHD when calculated from both fasting and non-fasting measurements, with hazard ratio (HR) for fasting MetS-Z 1.53 (95% confidence interval [CI] 1.42, 1.66) and for non-fasting 1.28 (CI 1.08, 1.51). MetS-Z at Visit-1 also remained linked to future diabetes when measured from non-fasting samples, with odds ratio for fasting MetS-Z 3.10 (CI 2.88, 3.35) and for non-fasting 1.92 (CI 1.05, 3.51). CONCLUSIONS: MetS-Z remained linked to future CHD and diabetes when assessed from non-fasting samples. A score such as this may allow for identification of at-risk individuals and serve as a motivation toward interventions to reduce risk.

Use of Ecological Momentary Assessment to Measure Self-Monitoring of Blood Glucose Adherence in Youth With Type 1 Diabetes.

OBJECTIVE: Daily self-monitoring of blood glucose (SMBG) is essential for type 1 diabetes management yet is challenging during adolescence. Ecological momentary assessment (EMA) is the repeated sampling of behaviors and experiences in real time in the natural environment. The purpose of this study was to evaluate 1) the validity of self-reported SMBG values via text message-delivered EMA surveys compared with objective SMBG values via glucose meters and 2) in-the-moment motivators and barriers to performing SMBG in a pediatric type 1 diabetes population. METHODS: Youth (n = 62, aged 11-21 years) with type 1 diabetes received three text messages daily for 10 days containing surveys inquiring about SMBG engagement. Objective SMBG values were downloaded from glucose meters. RESULTS: On average, participants reported performing SMBG 4 times/day. Of the self-reported SMBG values, 39.6% were accurate. Inaccurate values included additions (i.e., self-reported value with no objective value), omissions (i.e., objective value with no self-reported value), and alterations (difference between self-report and objective SMBG values ≥10 mg/dL). Of the matched pairs of self-reported and objective SMBG values, 41.3% were altered. Bland-Altman plots determined that the mean difference between self-reported and objective glucose data were -5.43 mg/dL. Participants reported being motivated to check their blood glucose because it was important for their health, and reported barriers included wanting to ignore the task, forgetting, and not having devices. CONCLUSION: Youth's self-reported SMBG values may not align with objective readings. The results of this study can facilitate future research to determine individual factors related to SMBG and accuracy of self-reporting.

Primary Care Providers in California and Florida Report Low Confidence in Providing Type 1 Diabetes Care.

People with type 1 diabetes may receive a significant portion of their care from primary care providers (PCPs). To understand the involvement of PCPs in delivering type 1 diabetes care, we performed surveys in California and Florida, two of the most populous and diverse states in the United States. PCPs fill insulin prescriptions but report low confidence in providing type 1 diabetes care and difficulty accessing specialty referrals to endocrinologists.

Metabolic syndrome severity is significantly associated with future coronary heart disease in Type 2 diabetes.

BACKGROUND: The severity of the metabolic syndrome (MetS) is significantly associated with future coronary heart disease (CHD) among individuals without baseline Type 2 diabetes. However, the validity of assessing MetS severity among individuals with diabetes is unknown. OBJECTIVE: To assess for differences in MetS severity by timing of Type 2 diabetes diagnosis and to assess for associations between MetS severity and future CHD among individuals with diabetes. METHODS: We analyzed data from participants of the Atherosclerosis Risk in Communities study, including 1419 with- and 7241 without diabetes, followed during 4 visits and adjudicated CHD diagnoses over a 20-year period. We used Cox-regression techniques to assess hazard ratios (HR) of CHD based on a sex- and race/ethnicity-specific MetS-severity Z-score (standard MetS score) and a similar MetS-severity score formulated without incorporating glucose as a component of MetS (no-glucose MetS score). RESULTS: For both the standard- and no-glucose MetS-severity scores, scores were highest in the baseline-diabetes group, lowest in the never-diabetes group and intermediate in the incident-diabetes groups. Among participants with diabetes, increasing MetS-severity score at baseline was associated with incident CHD, using both the standard MetS score (HR 1.29, 95% confidence interval [CI] 1.21, 1.39) and the no-glucose score (HR 1.42, CI 1.24, 1.62) (both p < 0.001). For the baseline-diabetes group, this relationship remained significant when Visit 2 Hemoglobin-A1c was included in the model, both for the standard MetS score (HR 1.21, CI 1.09, 1.34; p < 0.001) and the no-glucose score (HR 1.25, CI 1.04, 1.51; p = 0.02). CONCLUSIONS: MetS severity appears to provide an estimate of metabolic disarray in the setting of diabetes and is predictive of future CHD events beyond HbA1c. Identifying MetS severity among individuals with diabetes may help in identifying those at higher risk, who could then receive further preventative treatment.

Metabolic Syndrome Severity and Risk of CKD and Worsened GFR: The Jackson Heart Study.

BACKGROUND/AIMS: The metabolic syndrome (MetS), as assessed using dichotomous criteria, is associated with increased risk of future chronic kidney disease (CKD), though this relationship is unclear among African Americans, who have lower risk for MetS but higher risk for CKD. METHODS: We performed logistic regression using a sex- and race-specific MetS-severity z-score to assess risk of incident CKD among 2,627 African-American participants of the Jackson Heart Study, assessed at baseline and 8 years later. Based on quartile of baseline MetS severity, we further assessed prevalence of being in the lowest quartile of baseline GFR, the lowest quartile of relative GFR at follow-up, microalbuminuria and incident CKD. RESULTS: Higher MetS-severity was associated with higher prevalence of GFR in the lowest quartile at baseline among males and females. Among African-American females but not males, higher baseline MetS-severity was associated with a higher prevalence of baseline elevations in microabuminuria (p<0.01), steep decline in GFR (p<0.001) and a higher incidence of CKD (p<0.0001). Women in increasing quartiles of baseline MetS-severity exhibited a linear trend toward higher odds of future CKD (p<0.05), with those in the 4th quartile of MetS-severity (compared to the 1st) having an odds ratio of 2.47 (95% confidence interval 1.13, 5.37); no such relationship was seen among men (p value for trend 0.49). CONCLUSION: MetS-severity exhibited sex-based interactions regarding risk for future GFR deterioration and CKD, with increasing risk in women but not men. These data may have implications for triggering CKD screening among African-American women with higher degrees of MetS-severity.

Safety of Extended Propofol Infusions in Critically Ill Pediatric Patients.

Introduction Propofol is a phenol agent with sedative and anesthetic properties that has been in use for decades, but with controversy in critically ill pediatric patients, given the concern for developing propofol-related infusion syndrome (PRIS). Our aim was to assess the risk of propofol infusions in the pediatric intensive care unit (PICU) at doses and durations greater than the described safety data and its associated covariables. Methods Retrospective cohort analysis of 173 patients receiving propofol in the PICU. Patients were categorized as receiving greater or less than 48-hour infusions. Demographic data and daily clinical variables were recorded for up to seven days post-infusion initiation or until infusion was stopped. Results In this descriptive analysis, patients' demographics were similar, but admission diagnosis was not. Both groups received high mean doses of propofol (>67 mcg/kg/min), with no cases of PRIS observed. The illness severity scores and the need for vasoactive infusion support varied between the cohorts, with higher illness scores and a higher percentage of subjects requiring vasoactive agents in the >48-hour cohort. Finally, there were no major differences in lactate levels or biochemical characteristics between the two groups. Conclusions This study provides pilot data in relation to the feasibility of propofol infusion in critically ill pediatric patients and underscores the need for a larger multicenter study to draw clinical recommendations.

Fertility in the Digital Age: A Survey-Based Evaluation of Fertility App Users' Quality of Life.

This study sought to characterize fertility app use among women seen for infertility care and to investigate the association between fertility app use and quality of life. This survey-based study was conducted at an academic infertility clinic. Surveys were administered to patients who presented for a new infertility visit. One survey collected information regarding app use and the second survey was FertiQoL, an internationally validated instrument measuring quality of life in those with infertility. Descriptive statistics were used to characterize the patient population regarding app use and FertiQoL scores. Comparisons between those who did and didn't use an app were evaluated using t-tests and Cochran Armitage test for trend. 149 surveys were collected. Most (75.5%) participants reported using a fertility app. Most participants (85.1%) used a free app and nearly all (97.2%) found their app helpful. There was a significant difference (p = 0.0034) in satisfaction with one's quality of life between app users and non-app users with app users demonstrating higher satisfaction. There were no significant differences between app users and non-app users with their overall FertiQoL scores however there was a statistically significant difference (p = 0.031) in Relational sub-scores with app users displaying higher scores. While overall quality of life, measured by standardized measures, did not differ, self-perceived satisfaction with quality of life improved with more satisfaction reported in those using an app. This self-perceived satisfaction and increased quality of life surrounding relationships carries important implications, especially when one may face the stress of infertility and its treatment.

COVID-19 impacts and inequities among underserved communities with diabetes.

Background: People with diabetes have higher COVID-19 morbidity and mortality. These risks are amplified for underserved communities including racial/ethnic minorities and people with lower socioeconomic status. However, limited research has examined COVID-19 outcomes specifically affecting underserved communities with diabetes. Methods: From November 2021 to July 2022, adults with insulin-requiring diabetes at federally qualified health centers in Florida and California (n = 450) completed surveys examining COVID-19 outcomes and demographics. Surveys assessed COVID-19 severity, vaccination uptake, mask-wearing habits, income changes, and healthcare access changes. Surveys also included the full Coronavirus Anxiety Scale (CAS-19). Descriptive statistics were computed for all outcomes. Between-group comparisons for state and race/ethnicity were evaluated via Chi-Squared, Fisher's Exact, Cochran-Mantel-Haenszel, One-Way ANOVA, and t-tests. Logistic regression determined factors associated with COVID-19 vaccination uptake. Data were self-reported and analyzed cross-sectionally. Results: Overall, 29.7 % reported contracting COVID-19; of those, 45.3 % sought care or were hospitalized. Most (81.3 %) received ≥ 1 vaccine. Hispanics had the highest vaccination rate (91.1 %); Non-Hispanic Blacks (NHBs) had the lowest (73.9 %; p =.0281). Hispanics had 4.63x greater vaccination odds than Non-Hispanic Whites ([NHWs]; 95 % CI = [1.81, 11.89]). NHWs least often wore masks (18.8 %; p <.001). Participants reported pandemic-related healthcare changes (62 %) and higher costs of diabetes medications (41 %). Income loss was more frequent in Florida (76 %; p <.001). NHBs most frequently reported "severe" income loss (26.4 %; p =.0124). Loss of health insurance was more common among NHBs (13.3 %; p =.0416) and in Florida (9.7 %; p =.039). COVID-19 anxiety was highest among NHBs and Hispanics (IQR = [0.0, 3.0]; p =.0232) and in Florida (IQR = [0.0, 2.0]; p =.0435). Conclusions: Underserved communities with diabetes had high COVID-19 vaccine uptake but experienced significant COVID-19-related physical, psychosocial, and financial impacts. NHBs and those in Florida had worse outcomes than other racial/ethnic groups and those in California. Further research, interventions, and policy changes are needed to promote health equity for this population.

Project Extension for Community Healthcare Outcomes Intervention Evaluations: A Scoping Review of Research Methods.

INTRODUCTION: Since its inception in 2003, the Project Extension for Community Healthcare Outcomes (ECHO) tele-education model has reached and improved outcomes for patients, providers, and health centers through interventions in >180 countries. Utilization of this model has recently increased due to the COVID-19 pandemic and a higher demand for remote education. However, limited research has examined the methodologies used to evaluate Project ECHO interventions. METHODS: We conducted a scoping review to determine the extent and types of research methods used to evaluate outcomes and implementation success of Project ECHO interventions and to identify gaps and opportunities for future investigation. Using Arksey and O'Malley's scoping review framework and the PRISMA-ScR checklist, we reviewed study designs, temporality, analysis methods, data sources, and levels and types of data in 121 articles evaluating Project ECHO interventions. RESULTS: Most interventions addressed substance use disorders (24.8%, n = 30), infectious diseases (24%, n = 29), psychiatric and behavioral health conditions (21.5%, n = 26), and chronic diseases (19%, n = 23). The most frequently reported evaluation methods included cohort studies (86.8%, n = 105), longitudinal designs (74.4%, n = 90), mixed methods analysis (52.1%, n = 63), surveys (61.2%, n = 74), process evaluation measures (98.3%, n = 119), and provider-level outcome measures (84.3%, n = 102). Few evaluations used experimental designs (1.7%, n = 2), randomization (5.8%, n = 7), or comparison groups (14%, n = 17), indicating limited rigor. DISCUSSION: This scoping review demonstrates the need for more rigorous evaluation methods to test the effectiveness of the Project ECHO model at improving outcomes and standardized reporting guidelines to enhance the dissemination of evaluation data from future Project ECHO interventions.