Research Goes Red: Early Experience With a Participant-Centric Registry.

RATIONALE: Cardiovascular disease remains the leading cause of death in women. To address its determinants including persisting cardiovascular risk factors amplified by sex and race inequities, novel personalized approaches are needed grounded in the engagement of participants in research and prevention. OBJECTIVE: To report on a participant-centric and personalized dynamic registry designed to address persistent gaps in understanding and managing cardiovascular disease in women. METHODS AND RESULTS: The American Heart Association and Verily launched the Research Goes Red registry (RGR) in 2019, as an online research platform available to consenting individuals over the age of 18 years in the United States. RGR aims to bring participants and researchers together to expand knowledge by collecting data and providing an open-source longitudinal dynamic registry for conducting research studies. As of July 2021, 15 350 individuals have engaged with RGR. Mean age of participants was 48.0 48.0±0.2 years with a majority identifying as female and either non-Hispanic White (75.7%) or Black (10.5%). In addition to 6 targeted health surveys, RGR has deployed 2 American Heart Association-sponsored prospective clinical studies based on participants' areas of interest. The first study focuses on perimenopausal weight gain, developed in response to a health concerns survey. The second study is designed to test the use of social media campaigns to increase awareness and participation in cardiovascular disease research among underrepresented millennial women. CONCLUSIONS: RGR is a novel online participant-centric platform that has successfully engaged women and provided critical data on women's heart health to guide research. Priorities for the growth of RGR are centered on increasing reach and diversity of participants, and engaging researchers to work within their communities to leverage the platform to address knowledge gaps and improve women's health.

A novel process for integrating patient stories into patient education interventions: incorporating lessons from theater arts.

OBJECTIVE: Patient narratives, or stories, are an effective means of educating patients because they increase personal relevance and may reduce counter-arguing. However, such stories must seamlessly combine evidenced-based health information while being true to real patient experiences. The purpose of this paper is to describe the process of developing an educational intervention using African-American patients' success stories controlling hypertension. METHODS: We identified a process to address stories development challenges. RESULTS: (1) To help identify story tellers, we conducted a literature review and subsequently streamlined the process of storyteller identification through screening and telephone interviews. (2) To better elicit stories, we consulted with experts in storytelling and incorporated principles from theater. (3) To select stories, we used intervention mapping to map the intervention to theory and key clinical concepts, and also engaged members of the target community to ensure scientific criteria and maintain authenticity. CONCLUSION: Using personal narratives as intervention requires weaving together science, theory and clinically sound content, while still being true to the art of storytelling. Through a careful process of identifying storytellers and story selection and drawing upon theater arts, creating stories for intervention can be streamlined while meeting the goals of authenticity and scientific soundness.

Association of smoking, sleep apnea, and plasma alkalosis with nocturnal ventricular arrhythmias in men with systolic heart failure.

BACKGROUND: Excess sudden death due to ventricular tachyarrhythmias remains a major mode of mortality in patients with systolic heart failure. The aim of this study was to determine the association of nocturnal ventricular arrhythmias in patients with low ejection fraction heart failure. We incorporated a large number of known pathophysiologic triggers to identify potential targets for therapy to reduce the persistently high incidence of sudden death in this population despite contemporary treatment. METHODS: Eighty-six ambulatory male patients with stable low (≤ 45%) ejection fraction heart failure underwent full-night attendant polysomnography and simultaneous Holter recordings. Patients were divided into groups according to the presence or absence of couplets (paired premature ventricular excitations) and ventricular tachycardia (VT) (at least three consecutive premature ventricular excitations) during sleep. RESULTS: In multiple regression analysis, four variables (current smoking status, increased number of arousals, plasma alkalinity, and old age) were associated with VT and two variables (apnea-hypopnea index and low right ventricular ejection fraction) were associated with couplets during sleep. CONCLUSIONS: We speculate that cessation of smoking, effective treatment of sleep apnea, and plasma alkalosis could collectively decrease the incidence of nocturnal ventricular tachyarrhythmias and the consequent risk of sudden death, which remains high despite the use of ß blockades.

Sex differences in medical care and early death after acute myocardial infarction.

BACKGROUND: Women receive less evidence-based medical care than men and have higher rates of death after acute myocardial infarction (AMI). It is unclear whether efforts undertaken to improve AMI care have mitigated these sex disparities in the current era. METHODS AND RESULTS: Using the Get With the Guidelines-Coronary Artery Disease database, we examined sex differences in care processes and in-hospital death among 78 254 patients with AMI in 420 US hospitals from 2001 to 2006. Women were older, had more comorbidities, less often presented with ST-elevation myocardial infarction (STEMI), and had higher unadjusted in-hospital death (8.2% versus 5.7%; P<0.0001) than men. After multivariable adjustment, sex differences in in-hospital mortality rates were no longer observed in the overall AMI cohort (adjusted odds ratio [OR]=1.04; 95% CI, 0.99 to 1.10) but persisted among STEMI patients (10.2% versus 5.5%; P<0.0001; adjusted OR=1.12; 95% CI, 1.02 to 1.23). Compared with men, women were less likely to receive early aspirin treatment (adjusted OR=0.86; 95% CI, 0.81 to 0.90), early beta-blocker treatment (adjusted OR=0.90; 95% CI, 0.86 to 0.93), reperfusion therapy (adjusted OR=0.75; 95% CI, 0.70 to 0.80), or timely reperfusion (door-to-needle time

Impact of time of presentation on the care and outcomes of acute myocardial infarction.

BACKGROUND: Prior studies have demonstrated an inconsistent association between patients' arrival time for acute myocardial infarction (AMI) and their subsequent medical care and outcomes. METHODS AND RESULTS: Using a contemporary national clinical registry, we examined differences in medical care and in-hospital mortality among AMI patients admitted during regular hours (weekdays 7 am to 7 pm) versus off-hours (weekends, holidays, and 7 pm to 7 am weeknights). The study cohort included 62,814 AMI patients from the Get With the Guidelines-Coronary Artery Disease database admitted to 379 hospitals throughout the United States from July 2000 through September 2005. Overall, 33 982 (54.1%) patients arrived during off-hours. Compared with those arriving during regular hours, eligible off-hour patients were slightly less likely to receive primary percutaneous coronary intervention (adjusted odds ratio [OR], 0.93; 95% confidence interval [CI], 0.89 to 0.98), had longer door-to-balloon times (median, 110 versus 85 minutes; P<0.0001), and were less likely to achieve door-to-balloon < or = 90 minutes (adjusted OR, 0.34; 95% CI, 0.29 to 0.39). Arrival during off-hours was associated with slightly lower overall revascularization rates (adjusted OR, 0.94; 95% CI, 0.90 to 0.97). No measurable differences, however, were found in in-hospital mortality between regular hours and off-hours in the overall AMI, ST-elevated MI, and non-ST-elevated MI cohorts (adjusted OR, 0.99; 95% CI, 0.93 to 1.06; adjusted OR, 1.05; 95% CI, 0.94 to 1.18; and adjusted OR, 0.97; 95% CI, 0.90 to 1.04, respectively). Similar observations were made across most age and sex subgroups and with an alternative definition for arrival time (weekends/holidays versus weekdays). CONCLUSIONS: Despite slightly fewer primary percutaneous coronary interventions and overall revascularizations and significantly longer door-to-balloon times, patients presenting with AMI during off-hours had in-hospital mortality similar to those presenting during regular hours.

Central sleep apnea, right ventricular dysfunction, and low diastolic blood pressure are predictors of mortality in systolic heart failure.

OBJECTIVES: The purpose of this study was to determine whether central sleep apnea (CSA) contributes to mortality in patients with heart failure (HF). BACKGROUND: Cheyne-Stokes breathing with CSA commonly occurs in patients with systolic HF. Consequences of CSA, including altered blood gases and neurohormonal activation, could result in further left ventricular dysfunction. Therefore, we hypothesized that CSA might contribute to mortality of patients with HF. METHODS: We followed 88 patients with systolic HF (left ventricular ejection fraction < or =45%) with (n = 56) or without (n = 32) CSA. The median follow-up was 51 months. RESULTS: The mean (+/-SD) of apnea-hypopnea index was significantly higher in patients with CSA (34 +/- 25/h) than those without CSA (2 +/- 1/h). Most of these events were central apneas. In Cox multiple regression analysis, 3 of 24 confounding variables independently correlated with survival. The median survival of patients with CSA was 45 months compared with 90 months of those without CSA (hazard ratio = 2.14, p = 0.02). The other 2 variables that correlated with poor survival were severity of right ventricular systolic dysfunction and low diastolic blood pressure. CONCLUSIONS: In patients with systolic HF, CSA, severe right ventricular systolic dysfunction, and low diastolic blood pressure might have an adverse effect on survival.

Sleep apnea is linked to heart failure, but does treatment improve outcome?

One of the factors that contribute to the progressively declining course of heart failure could be sleep apnea. Whether treating sleep apnea improves the clinical outcomes of patients with heart failure needs to be tested in randomized clinical trials.

Prevalence and treatment of breathing disorders during sleep in patients with heart failure.

Heart failure is a highly prevalent disorder, with significant economic impact, and is associated with excess morbidity and mortality. One factor that may contribute to the progressively declining course of heart failure is the occurrence of recurrent episodes of apnea and hypopnea. There are two major kinds of sleep-related breathing disorders: obstructive and central sleep apnea. In patients with heart failure, in contrast to the general population, central sleep apnea is the most common form of sleep-related breathing disorder. Episodes of apnea, hypopnea, and the subsequent hyperpnea cause sleep disruption, arousals, hypoxemia-reoxygenation, hypercapnia/hypocapnia, and changes in intrathoracic pressure. These pathophysiologic consequences of sleep-related breathing disorders have deleterious effects on the cardiovascular system, and may be even more pronounced in the setting of established heart failure and coronary artery disease. Therefore, sleep apnea in heart failure should be treated. Central sleep apnea may be treated with nocturnal supplemental nasal oxygen, theophylline, or nasal-positive pressure devices, such as nasal continuous positive airway pressure (CPAP). The treatment of choice for obstructive sleep apnea is nasal CPAP. Although long-term controlled trials of the effect of treatment of sleep apnea on mortality in patients with heart failure are still pending, treatment of sleep apnea, both obstructive and central, does result in a decrease in sympathetic activity and an improvement in systolic function, which are known surrogates of mortality. Therefore, diagnosis and treatment of sleep-related breathing disorders may increase survival of patients with heart failure.