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OBJECTIVES/GOALS: Caregivers of patients with ventricular assist devices (VAD) are invaluable contributors to patient health, but they may experience psychological symptoms or worsening quality of life related to caregiving. We aimed to explore VAD caregiving burden and resilience comparing high and low burden patient-caregiver dyads. METHODS/STUDY POPULATION: Using a convergent mixed-methods design, we conducted semi-structured interviews and collected self-reported surveys from patient-caregiver dyads. Patients (n=10, mean age 55.8 years) were mostly white males implanted as destination therapy. Caregivers (n=10, mean age 52.6) were mostly white females. Most dyads were spousal (n=6). Caregiver burden was measured with the Zarit Burden Interview Scale, using the median score to categorize lower and higher burden dyads (median = 12, IQR = 8). Data were analyzed using deductive and inductive coding for thematic analysis. RESULTS/ANTICIPATED RESULTS: Lower and higher burden dyads described the shared burden experience of 1) hyper-vigilance and uncertainty immediately post-implant and 2) changing relationship roles. Lower burden dyads were more likely to able to take on responsibilities outside of caregiving. Contextual differences among higher burden dyads included higher financial strain, less social support, worse quality of life (both patients and caregivers) and worse heart failure severity compared to lower burden dyads. All dyads were resilient, using coping strategies like cognitive reframing, positivity, and adaptation to new roles. Higher burden dyads were more vulnerable to coping fatigue and were more likely to express that the VAD had irreversibly changed their life. DISCUSSION/SIGNIFICANCE: VAD caregiver-patient dyads differ in their levels of caregiver burden. Burden experiences and resilience mechanisms may inform future interventions to reduce caregiver burden in diverse VAD dyads. Knowledge of the caregiver experience and factors contributing to burden can inform the healthcare team in providing essential caregiver support.
The Coronavirus Disease 2019 (COVID-19) pandemic has had substantial global morbidity and mortality. Clinical research related to prevention, diagnosis, and treatment of COVID-19 is a top priority. Effective and efficient recruitment is challenging even without added constraints of a global pandemic. Recruitment registries offer a potential solution to slow or difficult recruitment.
The purpose of this paper is to describe the design and implementation of a digital research recruitment registry to optimize awareness and participant enrollment for COVID-19-related research in Baltimore and to report preliminary results.
Planning began in March 2020, and the registry launched in July 2020. The primary recruitment mechanisms include electronic medical record data, postcards distributed at testing sites, and digital advertising campaigns. Following consent in a Research Electronic Data Capture survey, participants answer questions related to COVID-19 exposure, testing, and willingness to participate in research. Branching logic presents participants with studies they might be eligible for.
As of March 24, 2021, 9010 participants have enrolled, and 64.2% are female, 80.6% are White, 9.4% are Black or African American, and 6% are Hispanic or Latino. Phone outreach has had the highest response rate (13.1%), followed by email (11.9%), text (11.4%), and patient portal message (9.4%). Eleven study teams have utilized the registry, and 4596 matches have been made between study teams and interested volunteers.
Effective and efficient recruitment strategies are more important now than ever due to the time-limited nature of COVID-19 research. Pilot efforts have been successful in connecting interested participants with recruiting study teams.
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