Registry Participants Research Articles

Temporal trends and regional differences of initial oral antiarrhythmic drug options in patients with new-onset atrial fibrillation: a report from the GLORIA-AF registry

Abstract Background New-onset atrial fibrillation (AF) is common and antiarrhythmic drugs (AADs) are commonly used for treating such patients. However, whether there are temporal changes and regional differences in the choice of AADs in direct acting non-vitamin K oral anticoagulants (DOACs) era is less studied. Purpose The present study aimed to analyze the temporal trends and regional differences of initial oral AAD options in patients with new-onset AF in the GLORIA-AF registry, based on a proposed modernized classification of AADs in 2018 (Circulation, 2018, PMID: 30354657). AADs involved in the present study included traditional Vaughn-Williams Class I to Class IV AAD, Class IId AAD (digoxin), and Class VII AAD, which acts on the upstream of arrhythmia including angiotensin converting enzyme inhibition, angiotensin receptor blocker, and stains. Methods Temporal changes regarding the AAD use between the two phases of GLORIA-AF and regional differences of AADs choice were investigated. Factors associated with the choice of different AADs were established by multivariate logistic regression. Results Among the 36,617 participants in the GLORIA-AF registry, 33,208 (90.7%) were prescribed with AADs: 74.0% were rate control and 10.2% were rhythm control, and among the prescribed AADs, single and dual AADs were used in 73.3% and 24.9%, respectively. Moreover, 70.5% patients received upstream target modulators (Class VII AAD). Class IIa AADs (beta-blockers) were the most commonly prescribed AAD and slightly increased from Phase II (60.58%) to Phase III (62.91%) while the use of Class IId AAD (e.g. digoxin) decreased regardless of single or combined use. AADs use varied significantly among regions but the temporal trends and regional differences were similar with that of the overall cohort. Age, gender, comorbidities, admission signs, region, and concomitant medications (e.g. anticoagulants) were associated with the choices of different AADs. Conclusions In the DOAC era, new-onset AF patients receiving AAD commonly included upstream therapy. Rate control was still the dominant strategy for patients with new-onset AF but the use of Class IId AAD significantly decreased with the increased use of Class IIa AAD. The choice of AADs demonstrated significant regional differences and concomitant anticoagulants played important roles.Temporal trends in GLORIA-AFComparisons of AADs use in GLORIA-AF

The Belgian registry on coronary function testing (BELmicro registry): study population and prevalence of coronary vascular dysfunction

Abstract Background Coronary function tests (CFT) play a pivotal role in the diagnosis of coronary vascular dysfunction and in providing patients with tailored therapy. Aims To describe baseline characteristics and prevalence of coronary microvascular dysfunction (CMD) and coronary vasospasm in a real-world population of patients undergoing CFT. Methods The Belgian registry on coronary function testing (BELmicro registry) is a prospective, observational registry that includes 14 centers in Belgium. All patients undergoing clinically indicated CFT were included. Baseline characteristics, CFT data, and clinical outcomes were collected. Results Between October 2021 and September 2023, 449 patients were enrolled. The mean age was 65 ± 10 years, and 47.4% of patients were male. Fifty-nine percent of patients had hypertension, 18.7% diabetes, 69.5% hypercholesterolemia, and 40.1% smoking habit. On coronary angiography, the presence of coronary stenosis ≥ 50% was detected in 20.3% of patients. A microvascular physiology assessment was performed in 95.5% of patients, a vasoreactivity test in 28.5%, and both in 24.0%. CMD was diagnosed in 23.6% of patients. Definite epicardial vasospasm was diagnosed in 27.3% of patients, and microvascular spasm in 14.1%. The rates of severe complications were 0.7% for the microvascular physiology assessment and 0% for the vasoreactivity test. Conclusion Participants in the BELmicro registry represent a real-world population of patients, characterized by a high burden of cardiovascular risk factors. Both CMD and coronary vasospasm were frequent. CFT in daily clinical practice was feasible with a low rate of complications.Visual summaryScatter plot of measurements

Patient-reported pregnancy loss and maternal complications: Insights from the sickle cell disease implementation consortium.

Sickle cell disease (SCD) is associated with complications during pregnancy and can negatively influence maternal outcomes. Our study aimed to determine the prevalence and predictors of maternal morbidity among participants enrolled in an eight-site SCD Implementation Consortium (SCDIC) registry. We conducted a cross-sectional analysis of female registry participants, aged 15-45 years, with a confirmed diagnosis of SCD. Participants completed a survey of self-reported pregnancies and outcomes. Seven hundred and thirty-eight individuals had at least one pregnancy event, with 1076 live births. Twenty percent reported a pregnancy loss or fetal demise. Of the 1076 live births, 75% involved at least one complication. The most prevalent complications were pain crises (61.1%) and pregnancy requiring blood transfusion(s) (33.0%). Multiparous individuals with a prior occurrence of a complication in a previous pregnancy had higher odds of recurrence of the same complication in subsequent pregnancies (i.e., previous acute crisis was associated with subsequent acute pain events odds ratio [OR]: 3.13; 95% confidence interval [CI]: 2.06-4.76) and prior transfusion requiring another transfusion (OR: 3.22; 95% CI: 2.01-5.16). Individuals reported a high prevalence of pregnancy loss and maternal complications. Our findings underscore the importance of preconception counseling and early initiation of perinatal care in SCD.

Differences in Self-Monitoring Technology Use and Perceptions Between National Weight Control Registry Participants Maintaining and Regaining Weight

Differences in Self-Monitoring Technology Use and Perceptions Between National Weight Control Registry Participants Maintaining and Regaining Weight

The use of focal therapy for the treatment of prostate cancer in Canada: Where are we, how did we get here, and where are we going?

Focal therapy is an emerging treatment for localized prostate cancer. The objectives of this review were to: 1) review how focal therapies are regulated and approved; 2) summarize the scope and quality of the literature regarding safety, efficacy, and side-effects; and 3) outline ongoing clinical trials of focal therapy in Canada. Using the PRISMA framework for scoping reviews, we searched PubMed, Embase, and Cochrane from 2021-2024, complementing Hopstaken et al's search up functional and oncologic outcomes. Additionally, we examined the FDA database for regulatory details and ongoing trials in Canada via ClinicalTrial.gov. FDA approval for prostate tissue ablation was granted to high-intensity focused ultrasound (HIFU) in 2015 via the de novo pathway; other therapies followed the 510(k) route, citing equivalence to predicate devices. Most studies are in early stages, primarily single-arm, prospective cohort designs. Oncologic outcomes like cancer detection and survival rates, alongside functional data, such as adverse events and erectile function, were assessed. Recurrence-free survival at 48 months ranged from 58-92%, pad-free rates were greater than 95%, and rates of new-onset erectile dysfunction were variable, ranging from no change to 50%. Rates of serious adverse events (SAEs) were low, ranging from 0-14%. Three Canadian clinical trials are actively enrolling participants, and five private clinics were found offering private HIFU, irreversible electroporation (IRE), or transurethral ultrasound ablation (TULSA). Focal therapy technologies have gained regulatory approval for prostate tissue ablation, and, aside from provincial support for cryoablation in Alberta, are available to Canadians through private payment or clinical trials. Many studies demonstrate promising cancer control and impressive functional outcomes but are limited by their short followup and lack of comparator group. Clinical trial or registry participation should be prioritized to ensure an evidence-based integration into current prostate cancer treatment approaches.

8205 Within day Symptoms Of Adrenal Insufficiency Predict Reduced Quality Of Life And Adrenal Crises In 712 MyAI Registry Participants

Abstract Disclosure: J.G. Kallet: None. W. Hover: None. A. Krein: None. M. Lowe: None. M.F. Slovick: None. G. Kinney: None. S. Majka: None. K. Warren: None. S. Watts: None. M.T. McDermott: None. E.A. Regan: None. Multiple studies have shown reduced quality of life in people with adrenal insufficiency based on 1- 4 week recall of symptoms. However, “within-day” symptoms are commonly reported to treating physicians, and there is no clear understanding of what these symptoms represent for quality of life or adequate disease management. Lack of adequate cortisol has been postulated as a factor for both persistent symptoms and reduced quality of life but dose adjustment is not typically prescribed. Within-day symptoms are similar to those reported prior to treatment, and include lack of energy, nausea, vomiting, anorexia, headache, dizziness, shakiness, muscle cramps, and cognitive impairments. Addressing the relationship between “within-day” symptoms and replacement dosing could improve disease management. Further, understanding the association of within-day symptoms to outcomes (quality of life and adrenal crises) provides an impetus to change the standard of care. Individuals enrolled in the MyAI registry provided information about “within-day” symptoms. These included energy to accomplish tasks, cognitive symptoms, and overall symptoms. The questions were scored with increased values representing greater and more frequent symptoms and were summed to create a severity score. Patients also reported adrenal crisis within the past year and completed the AddiQoL as quality of life over the past 4 weeks.Responses were obtained from 712 adult registry participants - 84% female, age range 23-89, mean 51.2 (15.2) years - and 47% reported an adrenal crisis within the past year. Within-day symptom score range was 3-15 points with mean 7.9 and SD of 2.96. Higher “within-day” symptom scores were associated with stepwise reductions in the AddiQoL (worse quality of life). Individuals who reported an adrenal crisis within the past year had significantly increased symptom scores [8.8 (2.9) vs 6.7 (2.5), p<0.0001]. Regression model for the AddiQoL total score (R2 = 0.8) found after adjusting for group, age and sex, that BMI (p = 0.0002) and symptom score (p<0.0001) were highly significant predictors of worse AddiQoL score. ConclusionAdrenal crisis is reported frequently by patients who are being treated for adrenal insufficiency. We found a strong association of “within-day” symptoms to both risk of adrenal crisis and reduced quality of life. Addressing persistent disease-related symptoms in adrenal insufficiency would be an appropriate disease management response to improve care. The initial choice of replacement dosing based on body surface area or other metric may be a starting point for care but should be informed by studies that show large variation in absorption and metabolism between individuals. Adjusting doses of replacement hormones and careful management of adrenal insufficiency symptoms could improve outcomes. Presentation: 6/1/2024

Exploring the relationship between neurologists and older persons with multiple sclerosis through the lens of social support theory.

Although healthcare practitioners (HCPs) are a valuable source of social support, research on support provided by neurologists to older persons with multiple sclerosis (pwMS) remains limited. To explore expectations of pwMS aged 55 years or older regarding MS care and to identify support types, met and unmet needs within their relationship with neurologists. Utilizing a mixed-methods approach, we analyzed survey data from Swiss Multiple Sclerosis Registry participants. Quantitative data included Likert scales gauging the importance of various aspects of MS care for pwMS both in and out of neurological care. Qualitative data were derived from three open-ended questions, focusing on neurologist-provided support for pwMS in neurological care. Data underwent descriptive and deductive thematic analysis, using Cutrona and Suhr framework for coding social support. Among the 286 participants (median age 61.0 years, interquartile range (IQR) 57.0-66.0; median disease duration 23.5 years, IQR 15.0-31.0), 84.6% (N = 244) were under neurological care. Quantitative findings highlighted the significance of HCP expertise and consultation time. Qualitative analysis identified all social support domains in the neurologist-pwMS relationship, with informational support being most prevalent, followed by emotional support. Neurologists' expertise, availability, comprehensive advising, listening, and validation emerged as key themes. Unmet needs were relatively infrequent and concerned insufficient information on complementary medicine, empathy, and understanding of symptoms like fatigue. Older pwMS see neurologists as adequate providers of comprehensive support and particularly value neurologists' sufficient availability, informational and emotional support. Areas for improvement include attention to complementary medicine and empathy.

Palliative care knowledge and access among people with small cell lung cancer and their family caregivers: Preliminary findings.

197 Background: People with small cell lung cancer (SCLC) make up 13-15% of those diagnosed with lung cancer. Although current statistics show the 5-year survival rate of people with lung cancer has improved overall, this is not the case for those diagnosed with SCLC. The disease is rapidly growing and aggressive, making access to palliative care crucial for improving quality of life for both people with SCLC and their family members. We developed a survey to assess palliative care knowledge and access among people with small cell lung cancer and their family caregivers. Methods: An online cross-sectional survey was conducted by the Lung Cancer Registry from GO2 for Lung Cancer (lungcancerregistry.org) from June 2023-present and included questions regarding treatment decision making, palliative care, and access to care. The SCLC survey is promoted to current Lung Cancer Registry participants who indicated a diagnosis of SCLC or were a family caregiver of someone with SCLC. Both people with SCLC and their family caregivers are eligible to participate in the survey. We also recruited people with SCLC through additional targeted online recruitment, direct outreach to community hospitals, and healthcare providers. Descriptive statistics were used to summarize survey findings. Results: As of May 2024, the SCLC survey was completed by 20 participants (mean age, 62 years; White, 85.0%; female, 55.0%; diagnosed with SCLC, 95.0%). Over half of people with SCLC (n = 11, 55.0%) had a family caregiver. While most participants had heard of palliative care (n = 15, 75.0%), less than half (n = 9, 45.0%) were offered or given information about it. Half of participants (n = 10, 50.0%) received or indicated they would like to receive palliative care. When asked what was needed from palliative care amongst these individuals, medication management for pain and physical symptoms was the top response (26.9%). For those who did not receive or would not like to receive palliative care, the top reasons included that it was not offered to them (26.7%) and wanting to learn more about it first to guide their decision-making (20.0%). Lastly, when asked what type of palliative care support was needed, emotional support was the top response (27.3%) followed by information on coping with lung cancer (24.2%). Conclusions: Preliminary findings suggest efforts are needed by care teams to expand access and improve education regarding palliative care among people with SCLC and their family caregivers. The fast-growing, aggressive nature of SCLC makes it especially urgent that care teams reach and meet the needs of this population. Our findings thus far highlight the need for additional research with larger sample sizes to ensure generalizability for the small cell lung cancer community.

Abstract C071: Comprehensive genomics-informed prospective older adult (OA) cancer registry: Initial findings from gastrointestinal (GI) malignancy

Abstract The REACH study (Resilience and Equity in Aging, Cancer, and Health) assesses the impact of geriatric consultation on reducing emergency department and/or unplanned hospitalization visits (EDH) for OA age 70+ diagnosed with GI cancer. We sought to develop an OA GI cancer registry (REACH Registry) within the REACH intervention integrating 1) disease and treatment factors from the PRISSMM cancer taxonomy model with 2) patient reported outcomes and 3) geriatric assessment (GA) measures predictive of function, toxicity, and survival. We reviewed GA measures using the modified Rockwood frailty scale, PROMIS-10 global mental and physical scores, Karnofsky performance status, health-related social needs, and disease/treatment factors using PRISSMM cancer taxonomy for OA consented to REACH in the GI Cancer Center at Dana-Farber Cancer Institute (DFCI) from January 2022–April 2024. OA were eligible if age 70+ at initial DFCI consult visit and diagnosed with any GI cancer. The GA stratifies OA by frailty level on a 0-1 scale: Fit/Robust (score range 0–0.19), Pre-Frail (0.2–0.34), and Frail (0.35–1.0). PRISSMM is a cancer data modeling system developed for the American Association for Cancer Research Project Genomics Evidence Neoplasia Information Exchange (GENIE) Biopharma Collaborative; it includes pathology, radiology/imaging, symptoms, and molecular markers curated by trained research staff from unstructured EHR data. From Jan. 2022–Apr. 2024, 50 OA consented to REACH registry (94 eligible). Of those, 44% (n=22) have PRISSMM data available for analysis. Most OA reported white race (90%, n=45) and female gender (52%, n=26). Pancreatic cancer was the most common diagnosis (n=21), followed by colon (9), biliary (5), and esophageal (4). Most OA completed GA (90%, n=45) with 51% screened Fit/Robust (n=23), 47% Pre-Frail (n=21), and 2% Frail (n=1). Type 2 diabetes mellitus was the most commonly reported comorbid condition (26%, n=13), followed by chronic kidney disease (n=6) and congestive heart failure (n=3). Of the 22 OA with available PRISSMM data, 59% (n=13) were diagnosed with stage IV disease and 100% received cancer-directed therapy; 72% (n=16) received standard care, 27% clinical trial (n=6). Most OA consented for tumor somatic genomic testing (77%, n=17). At the time of data curation 24 months from assessment, 20 patients had died, 30 were alive. Evaluation of the REACH intervention geriatric consultation on EDH outcome is forthcoming. REACH registry is the first GI cancer database inclusive of geriatric specific measures alongside curated disease, treatment and genomic data. We observed a higher rate of genomic testing and treatment initiation than reported in the literature. We anticipate that by September 2024, a larger cohort of REACH Registry participants will have completed PRISSMM data available for analysis. Future study will compare EDH for REACH vs. non-REACH OA as well as treatment patterns of this OA cohort evaluated at a large comprehensive cancer center and associated community sites. Citation Format: Tammy T. Hshieh, Rachel L. Weitzner, Siri Rosenberg, Leila Rostamnjad, Lauren K. Brais, Nora Horick, Tamryn Gray, Jiping Wang, Jeffrey Meyerhardt, Nadine J. McCleary. Comprehensive genomics-informed prospective older adult (OA) cancer registry: Initial findings from gastrointestinal (GI) malignancy [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C071.

Worldwide CTEPH Registry: Long-Term Outcomes With Pulmonary Endarterectomy, Balloon Pulmonary Angioplasty, and Medical Therapy.

The European Chronic Thromboembolic Pulmonary Hypertension registry (CTEPH), conducted between 2007 and 2012, reported the major impact of pulmonary endarterectomy (PEA) on the long-term survival of patients with CTEPH. Since then, 2 additional treatments for inoperable CTEPH have become available: balloon pulmonary angioplasty (BPA), and an approved oral drug therapy with the guanylate cyclase stimulator riociguat. The current registry aimed to evaluate the effect of these new therapeutic approaches in a worldwide context. Participation in this international global registry included 34 centers in 20 countries. Between February 2015 and September 2016, 1009 newly diagnosed, consecutive patients were included and followed until September 2019. Overall, 605 patients (60%) underwent PEA and 185 (18%) underwent BPA; 76% of the 219 remaining patients not receiving mechanical intervention (ie, neither PEA nor BPA) were treated with pulmonary hypertension drugs. Oof patients undergoing PEA and BPA, 38% and 78% also received drugs for pulmonary hypertension, respectively. Median age at diagnosis was higher in the BPA and No PEA/BPA groups than in the PEA group: 66 and 69, respectively, versus 60 years. Pulmonary vascular resistance (PVR) was similar in all groups, with an average of 643 dynes/(s·cm-5). During an observation period (>3 years; ≤5.6 years), death was reported in 7%, 11%, and 27% of patients treated by PEA and BPA, and those receiving no mechanical intervention (P<0.001). In Kaplan-Meier analysis, 3-year survival was 94%, 92%, and 71% in the 3 groups, respectively. PEA 3-year survival improved by 5% from that observed between 2007 and 2012. There was no survival difference in patients receiving vitamin K antagonists and non-vitamin K oral anticoagulants (P=0.756). In Cox regression, reduced mortality was associated with: PEA and BPA in the global cohort; history of venous thromboembolism and lower PVR in the PEA group; lower right atrial pressure in the BPA group; and use of pulmonary hypertension drugs, oxygen therapy, and lower right atrial pressure, as well as functional class in the group receiving no mechanical intervention. This second international CTEPH registry reveals important improvement in patient survival since the introduction of BPA and an approved drug for pulmonary hypertension. The type of anticoagulation regimen did not influence survival. URL https://clinicaltrials.gov; Unique identifier: NCT02656238.

Single Anastomosis Duodeno-Ileostomy with Sleeve Gastrectomy/Single Anastomosis Duodenal Switch (SADI-S/SADS) IFSO Position Statement-Update 2023.

The single anastomosis duodeno-ileostomy with sleeve gastrectomy/single anastomosis duodenal switch (SADI-S/SADS) has gained attention as an alternative to the traditional biliopancreatic diversion with duodenal switch (BPD-DS). In 2021, IFSO endorsed SADI-S/SADS as a safe and effective procedure, underscoring the necessity for long-term multidisciplinary care and randomized controlled trials (RCTs). A task force was established to conduct a systematic review of current evidence on SADI-S/SADS to guide clinical practice. A systematic review was conducted across three databases, focusing on studies examining SADI-S/SADS and its outcomes. A total of 93 studies were analyzed. SADI-S/SADS demonstrated efficacy in weight loss and medium-to-long-term control of type 2 diabetes mellitus (T2DM), along with positive outcomes regarding hypertension and hyperlipidemia. However, its impact on other comorbidities remains inconclusive. Frequent nutritional deficiencies were identified, particularly in fat-soluble vitamins, anemia, and hypoalbuminemia. Despite significant efforts, high-quality evidence on SADI-S/SADS remains scarce, prompting IFSO to advocate for increased registry participation, publication of long-term studies, and more RCTs. Lifelong supplementation and monitoring for nutritional deficiencies are recommended. The current position statement will be reviewed in 2 years.

Roadmap for Linking Registry Data with Health Services Data to Support Evidence-Informed Decision-Making.

ApproachAs part of a learning period to optimize the use of RWE for decision-making for drugs for rare diseases, the [organization name removed to allow for blind review] conducted an environmental scan to map real-world data in patient registries. Over 400 patient registries were identified, signaling the potential wealth of untapped information to support decision-making by linking registry data with health services data. To better understand the challenges faced by registry holders hoping to link registry data with health services data sources available in Canada, a series of interviews were conducted with several Canadian rare disease registries. In addition, a literature review was completed, and Canadian experts in epidemiology, privacy, record linkage, registry science, and health services research were consulted to inform the development of a roadmap to meet various stakeholder needs. ResultsThe resulting roadmap consists of 8 specific steps covering topics related to registry purpose, informed consent, ethical approval, participant privacy, governance, data linkability, participant identifiability and jurisdictional requirements. ConclusionThe roadmap is currently undergoing pilot testing by a pan-Canadian rare disease registry. A final [organization name] report and an accompanying roadmap in a checklist format to facilitate implementation will be finalized, disseminated across key stakeholders, and made publicly available. ImplicationsWhile developed for registries, the roadmap applies to the linkage of clinical trial or cohort study data, or other systematically gathered patient-level data to health services data.

The Belgian Registry on Coronary Function Testing (BELmicro Registry): Study Population, Prevalence of Coronary Vascular Dysfunction, and Procedural Safety

Coronary function testing (CFT) plays a pivotal role in the diagnosis of coronary vascular dysfunction and providing patients with tailored therapy. The Belgian registry on CFT (BELmicro registry) is a prospective, observational, multicenter registry including 14 centers in Belgium. All patients who underwent clinically indicated CFT were included in the registry. Baseline characteristics, CFT data, and clinical outcomes were collected. This analysis aimed to describe the baseline characteristics of a real-world population of patients who underwent CFT, evaluate the prevalence of coronary vascular dysfunction, and assess the safety of CFT in daily clinical practice. Between October 2021 and September 2023, 449 patients were enrolled. The mean age was 65 ± 10 years, and 47.4% of patients were men. A total of 59% of patients had hypertension, 18.7% had diabetes, 69.5% had hypercholesterolemia, and 40.1% had a smoking habit. Angina and nonobstructive coronary arteries (ANOCAs) were identified in 85.1% of the patients. Microvascular physiology assessment was performed in 95.5% of patients, vasoreactivity test in 28.5%, and both in 24.0%. coronary microvascular dysfunction was diagnosed in 23.4% of patients with ANOCA, epicardial vasospasm in 26.3%, and microvascular spasm in 14.9%. Rates of major complications were 0.7% for microvascular physiology assessment and 0% for vasoreactivity test. In conclusion, participants in the BELmicro registry represented a real-world population of patients, characterized by a high burden of cardiovascular risk factors. Coronary microvascular dysfunction and coronary vasospasm were frequent in patients with ANOCA. Performing CFT in daily clinical practice was feasible, with a low rate of complications.

Open Burn Pit Exposure in Headache Disorder and Migraine

Open burn pits have commonly been used for waste disposal by the US military but have not been systematically investigated as an independent risk factor for headache disorders. To evaluate the association between exposure to open burn pits and incidence of headache and migraine. This retrospective cohort study used data from the Veterans Health Administration Headache Cohort along with data from the US Department of Defense and the Airborne Hazards and Open Burn Pit (AH&OBP) Registry to assess registry participants with potential exposure to open burn pits in the Veterans Health Administration from April 1, 2014, through October 31, 2022. Participants were included by linking data from the AH&OBP Registry to their US Department of Defense and Veterans Health Administration electronic health records. Those with preexisting headache were removed from the analytic sample. The analysis was conducted between November 1, 2022, and January 31, 2024. Open burn pit exposure composite variables based on the registry questionnaire were examined, specifically being near open burn pits, days near open burn pits, and having open burn pit duties. Primary incident outcomes included medically diagnosed headache disorders and medically diagnosed migraine. The analytic sample included 247 583 veterans (mean [SD] age, 27.9 [7.7] years; 222 498 [89.9%] male). After covariates were controlled for at baseline, participants who were near an open burn pit with open burn pit duties had the highest adjusted odds of medically diagnosed headache disorders (adjusted odds ratio [AOR], 1.59; 95% CI, 1.46-1.74), migraine (AOR, 1.60; 95% CI, 1.43-1.79), and self-reported disabling migraine (AOR, 1.93; 95% CI, 1.69-2.20) compared with those without exposure. The 2 highest quartiles of cumulative burn pit exposure (290-448 days and >448 days) had significantly higher adjusted odds of medically diagnosed headache (290-448 days: AOR, 1.20; 95% CI, 1.09-1.31; >448 days: AOR, 1.55; 95% CI, 1.41-1.70) and migraine (290-448 days: AOR, 1.19; 95% CI, 1.07-1.34; >448 days: AOR, 1.48; 95% CI, 1.32-1.65). In this cohort study, a dose-dependent association existed between open burn pit exposure and medically diagnosed headache and migraine. These new data identify potentially important associations between open burn bit exposure and new-onset headache among service personnel as well as a possible health condition that may be encountered more frequently in Veterans Health Administration facilities during mandatory screening for military exposures.

Bronchopulmonary dysplasia and diuretic use in an outpatient setting.

During Neonatal Intensive Care Unithospitalization, children born preterm with bronchopulmonary dysplasia (BPD) are frequently prescribed diuretics for chronic respiratory symptoms. However, less is known about diuretic use and weaning in an outpatient setting. Thestudy sought to characterize clinical features associated with outpatient diuretic use and timing of diuretic weaning in children with BPD. Data was obtained by chart review from 1224 registry participants born <32 weeks gestation, discharged between 2008 and 2023 and recruited from outpatient BPD clinics at Johns Hopkins Children's Center and the Children's Hospital of Philadelphia (97.4% diagnosed with BPD). Data was analyzed using Chi-square tests, t-tests, and ANOVA tests. Children on diuretics at their first pulmonary visit (n = 737) were more likely to have lower birth weights, earlier gestational age, and severe BPD compared to those not on diuretics (n = 487). Of those prescribed diuretics, most children were on a thiazide alone (46.4%) or a thiazide and a potassium sparing agent (44.8%) with a minority prescribed loop diuretics alone (3.3%) or loop diuretic combinations (4.7%). Most children weaned off diuretics by 2 years of age. Public insurance, early gestational age, technology dependence, home supplemental oxygen use and loop diuretics were associated with slower diuretic weaning. Outpatient diuretic use is common in children with BPD, however variations in diuretic use and diuretic combinations exist across centers. Time to wean off home supplemental oxygen is similar between children on one diuretic compared to none. Timing of outpatient diuretic weaning is influenced by diuretic class, respiratory support, and co-morbidities.

In-hospital cardiac arrest survival before and after the COVID-19 pandemic: Have higher performing hospitals stayed high-performing?

BackgroundSurvival for in-hospital cardiac arrest (IHCA) has declined since the COVID-19 pandemic. Because the burden of COVID-19 was uneven throughout the U.S., it remains unknown if top-performer hospitals in IHCA survival have remained top-performers since the pandemic. MethodsWithin Get With The Guidelines®-Resuscitation, we identified hospitals with at least 2 years of registry participation pre-pandemic (2017–2019) and post-pandemic (July 2020–2022) and with at least 20 IHCA cases in both periods. Using multivariable hierarchical models with hospital as a random effect and adjusting for patient and arrest characteristics, we calculated risk-standardized survival rates to discharge (RSSR) for IHCA at each hospital during the pre- and post-pandemic periods. We then assessed the correlation between a hospital’s pre-pandemic and post-pandemic RSSR for IHCA, and whether the correlation differed by the proportion of Black or Hispanic IHCA patients at each hospital. ResultsA total of 243 hospitals were included, comprising 122,561 IHCAs (pre-pandemic: 57,601; post-pandemic: 64,960). Pre-pandemic, the mean RSSR was 26.8% (SD, 5.2%) whereas the mean RSSR post-pandemic was 21.7% (SD, 5.5%). There was good correlation between a hospital’s pre- and post-pandemic RSSR: correlation of 0.55. When hospitals were categorized into tertiles based on the proportion of their IHCA patients who were Black or Hispanic, this correlation remained similar: 0.48, 0.68, and 0.45 (interaction P-value: 0.69) for hospitals in the upper, middle and lower tertiles, respectively. ConclusionAlthough the COVID-19 pandemic affected the U.S. unevenly, there was good correlation in a hospital’s performance for IHCA survival before and after the pandemic, even at hospitals caring for a larger proportion of Black and Hispanic patients. Future studies are needed to understand what characteristics of high-performing hospitals pre-pandemic allowed many to continue to excel in the post-pandemic period.

Association of race and ethnicity with the development of cystic fibrosis-related diabetes

BackgroundCF-related diabetes (CFRD) is a common, life-expectancy limiting complication of CF. While Black race and Hispanic ethnicity in youth-onset type 1 and type 2 diabetes are well-recognized risk factors for worse diabetes complications, the potential for racial/ethnic disparities in CFRD has received limited attention. MethodsWe conducted a retrospective cohort study utilizing the CF Foundation Patient Registry from 2010 to 2019 to determine the prevalence and incidence of CFRD by race/ethnicity. Three age cohorts were identified at baseline in 2010 (11–20y, 21–30y, and 31–40y). Logistic regression and Cox regression stratified by age group were used to determine the prevalence and incidence, respectively, among Hispanic, non-Hispanic Blacks (NHB), and non-Hispanic whites (NHW) after adjustment for relevant confounders, including demographics, socioeconomic status, clinical factors, and chronic medication use. ResultsAmong 14,660 registry participants, 510 were NHB and 890 Hispanic. NHB associated with higher odds of CFRD baseline prevalence in all age cohorts (11–20y: OR 2.53 (95 % CI: 1.88–3.41, P < 0.05), 21–30y: OR 1.80 (1.25–2.59, P < 0.05), and 31–40y: OR 1.93 (1.00–3.73, P < 0.05)) relative to NHW. In the 11–20y cohort, the hazard of new-onset CFRD was 40 % higher in NHB (HR 1.40 (1.09–1.8, P < 0.05)) and 19 % higher in Hispanics (HR 1.19 (1.01–1.41, P < 0.05)). ConclusionNHB had a higher prevalence of CFRD across all age groups, with NHB and Hispanics showing higher incidence of CFRD in the youngest group. Multicenter studies performed in diverse CF populations are warranted to identify modifiable factors influencing earlier CFRD development in minoritized groups and their potential contribution to diabetes complication disparities.

Design and rationale of the Engage-HF study: the impact of a gamified engagement toolkit on participation and engagement in a heart failure registry.

Heart failure (HF) registries provide valuable insights into patient management and quality of care. However, healthcare professionals face challenges due to the administrative burden of participation in registries. This study aims to evaluate the impact of education through an engagement toolkit on HF nurse practitioners' participation rate and data completeness in a national registry: the Netherlands Heart Registration-Heart Failure (NHR-HF) registry. Engage-HF is an observational study (intervention at the HF nurse level) with a pretest-posttest design within the participating hospitals. Between December 2022 and April 2024, 28 HF nurse practitioners from 12 hospitals will participate in a 24-week educational programme using the Engage-HF engagement toolkit. The main interaction platform in this toolkit is a gamified smartphone-based educational application called BrightBirds. The complete toolkit includes this educational application with weekly challenges, interactive posters, pop-ups, and alert messages, and a follow-up call at Week 4. The primary endpoints are the NHR-HF participation rates and data completeness at 1 and 6 months after using the toolkit. Additionally, we will analyse the experience of participants with the toolkit concerning their HF registry and knowledge of ESC 2021 HF guidelines. The Engage-HF study is the first to explore the impact of education through a gamified engagement toolkit to boost participation rates in a HF registry (NHR-HF) and test participant knowledge of the ESC 2021 HF guidelines. This innovative approach addresses challenges in the rollout of healthcare registries and the implementation of guidelines by providing a contemporary support base and a time-efficient method for education.

Low-Dose Prasugrel vs. Standard-Dose Clopidogrel for Patients Undergoing Percutaneous Coronary Intervention.

Low-dose prasugrel (3.75 mg) is used as maintenance therapy for percutaneous coronary intervention; however, data on long-term outcomes are scarce.Methods and Results: We analyzed 5,392 participants in the KiCS-PCI registry who were administered low-dose prasugrel or clopidogrel at discharge between 2008 and 2018 and for whom 2-year follow-up data were available. We adjusted for confounders using matching weight analyses and multiple imputations. Similarly, we used inverse probability- and propensity score-weighted analyses. We also performed instrumental variable analyses. The primary outcomes were acute coronary syndrome (ACS) and bleeding requiring readmission. Secondary outcomes were all-cause death and a composite outcome of ACS, bleeding, heart failure, stroke, coronary bypass requiring admission, and all-cause death. In this cohort, 12.2% of patients were discharged with low-dose prasugrel. Compared with clopidogrel, low-dose prasugrel was associated with a reduced risk of ACS (hazard ratio [HR] 0.58; 95% confidence interval [CI] 0.39-0.85), bleeding (HR 0.62; 95% CI 0.40-0.97), and the composite outcome (HR 0.71; 95% CI 0.59-0.86). Inverse probability-weighted analysis yielded similar results; however, matching weight analysis without multiple imputations and propensity score-matched analyses showed similar outcomes in both groups. Instrumental variable analyses showed reduced risks of ACS and composite outcome for those on low-dose prasugrel. All-cause mortality did not differ in all analyses. Low-dose prasugrel demonstrates comparable outcomes to clopidogrel in terms of ACS and bleeding.

Work Systems Factors Associated With Burnout in Sonographers Working in the United States and Canada

Objective: Burnout in sonographers is a prevalent and complex professional hazard associated with poorer quality of work life, productivity, and patient outcomes. This study aimed to understand the prevalence of and work systems factors associated with burnout among a large sample of sonographers. Materials and Methods: Research study registry participants (n = 3659) were invited to complete a follow-up survey about personal and work environment factors, including work hours, break time, coworker and supervisor support, and job satisfaction, overall health, and sleep quality. The Copenhagen Burnout Inventory assessed personal, work-related, and client burnout. Simple and multiple linear regressions were used to identify work systems factors associated with burnout. Results: Of 1389 respondents, over half reported moderate-to-severe personal and work-related burnout, while one-quarter reported moderate-to-severe client burnout. Higher work-related burnout was associated with younger age, working in the Western United States, working full-time, taking fewer weekly break hours, poorer overall health and sleep quality, and lower supervisor support and job satisfaction. Client burnout was associated with poorer sleep quality and lower job satisfaction. Conclusion: Burnout was prevalent in a large sample of sonographers. Multilevel work systems factors are associated with burnout, suggesting collaboration among sonographers, administrators, and organizations is needed to address burnout.