Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes.

BACKGROUND: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. AIM: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs. DESIGN: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries. DATA SOURCES: Medline, Psychinfo, Global Health, Embase and CINAHL. RESULTS: Thirty-five publications were included. Nearly half took place in Asia (n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people's homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context. CONCLUSION: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.

Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

Living with multimorbidity: A qualitative exploration of shared experiences of patients, family caregivers, and healthcare professionals in managing symptoms in the United States.

AIMS: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. DESIGN: Experience-based co-design. METHODS: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. RESULTS: Twenty-three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient-provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow-up care. CONCLUSION: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE AND IMPACT: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. REPORTING METHOD: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. PATIENT OR PUBLIC CONTRIBUTION: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience-based co-design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co-design events, to support symptom management for people with multimorbidity.

Grassroots and Digital Outreach Strategies Raise Awareness of COVID-19 Information and Research in Baltimore City.

We aimed to disseminate reliable COVID-19 information to the Black and Latino communities of Baltimore City, Maryland, between July 2020 and December 2022. With community partners, we disseminated evidence-based COVID-19 information via grassroots and digital strategies, including Hopkins Opportunity for Participant Engagement, and connected volunteers to COVID-19 research. Using a multimodal approach facilitated dissemination of reliable information and raised awareness of research; evaluation of trust is ongoing. Robust, multimodal strategies are needed to foster trust and equity among diverse communities. (Am J Public Health. 2024;114(S1):S69-S73. https://doi.org/10.2105/AJPH.2023.307492).

Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England.

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.

Trends in the Utilization of Herbal and Dietary Supplements in Patients with Chronic Liver Disease During the SARS-CoV2 Pandemic.

Background: We studied the pattern of herbal and dietary supplement (HDS) use in patients with chronic liver disease (CLD) during the first year of the COVID-19 pandemic. Methods: A questionnaire/survey was sent to hepatology patients with CLD under the care of hepatologists at Johns Hopkins University School of Medicine. Results: The 5 most taken dietary supplements during the pandemic included vitamin B12 (27.7%), vitamin C (32.4%), vitamin D (54.6%), zinc (25.4%) and green tea extract (20.8%). Most participants (82.3%) did not discuss their HDS use with their hepatology providers. Conclusions: Healthcare providers should be mindful of potential HDS use in patients with CLD.

Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure.

Caregivers of persons with heart failure (HF) navigate complex care plans, yet support strategies often focus solely on meeting the needs of patients. We conducted a randomized waitlist control trial (N = 38) to test the feasibility and gauge initial effect size of the Caregiver Support intervention on quality of life, caregiver burden, and self-efficacy among HF caregivers. The intervention includes up to five remote, nurse-facilitated sessions. Components address: holistic caregiver assessment, life purpose, action planning, resources, and future planning. Caregivers were 93.3% female, 60% White, and 63.3% spouses. Average age was 59.4. Participants who completed the intervention reported high satisfaction and acceptability of activities. Between-group effect sizes at 16 and 32 weeks suggest improvement in quality of life (mental health) (.88; 1.08), caregiver burden (.31; .37), and self-efficacy (.63; .74). Caregivers found Caregiver Support acceptable and feasible. Findings contribute evidence that this intervention can enhance caregiver outcomes. Clinicaltrials.gov Identifier NCT04090749.

Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes.

Background: Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers. Objective: To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. Methods: A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines. Results: The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy. Conclusion: We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.

Palliative Care Utilization in Patients Requiring Extracorporeal Membrane Oxygenation: An Observational Study.

Palliative care (PC) is a model of care centered around improving the quality of life for individuals with life-limiting illnesses. Few studies have examined its impact in patients on extracorporeal membrane oxygenation (ECMO). We aimed to describe demographics, clinical characteristics, and complications associated with PC consultation in adult patients requiring ECMO support. We analyzed data from an ECMO registry, including patients aged 18 years and older who have received either venoarterial (VA)- or venovenous (VV)-ECMO support between July 2016 and September 2021. We used analysis of variance and Fisher exact tests to identify factors associated with PC consultation. Of 256, 177 patients (69.1%) received VA-ECMO support and 79 (30.9%) received VV-ECMO support. Overall, 115 patients (44.9%) received PC consultation while on ECMO. Patients receiving PC consultation were more likely to be non-white (47% vs. 53%, p = 0.016), have an attending physician from a medical versus surgical specialty (65.3% vs. 39.6%), have VV-ECMO (77.2% vs. 30.5%, p < 0.001), and have longer ECMO duration (6.2 vs. 23.0, p < 0.001). Patients were seen by the PC team on an average of 7.6 times (range, 1-35), with those who died having significantly more visits (11.2 vs. 5.6, p < 0.001) despite the shorter hospital stay. The average time from cannulation to the first PC visit was 5.3 ± 5 days. Congestive heart failure in VA-ECMO, coronavirus disease 2019 infection in VV-ECMO, and non-white race and longer ECMO duration for all patients were associated with PC consultation. We found that despite the benefits of PC, it is underused in this population.

Characteristics of delirium and its association with sedation and in-hospital mortality in patients with COVID-19 on veno-venous extracorporeal membrane oxygenation.

Background: Veno-venous extracorporeal membrane oxygenation (VV-ECMO) has been used in patients with COVID-19 acute respiratory distress syndrome (ARDS). We aim to assess the characteristics of delirium and describe its association with sedation and in-hospital mortality. Methods: We retrospectively reviewed adult patients on VV-ECMO for severe COVID-19 ARDS in the Johns Hopkins Hospital ECMO registry in 2020-2021. Delirium was assessed by the Confusion Assessment Method for the ICU (CAM-ICU) when patients scored-3 or above on the Richmond Agitation-Sedation Scale (RASS). Primary outcomes were delirium prevalence and duration in the proportion of days on VV-ECMO. Results: Of 47 patients (median age = 51), 6 were in a persistent coma and 40 of the remaining 41 patients (98%) had ICU delirium. Delirium in the survivors (n = 21) and non-survivors (n = 26) was first detected at a similar time point (VV-ECMO day 9.5(5,14) vs. 8.5(5,21), p = 0.56) with similar total delirium days on VV-ECMO (9.5[3.3, 16.8] vs. 9.0[4.3, 28.3] days, p = 0.43). Non-survivors had numerically lower RASS scores on VV-ECMO days (-3.72[-4.42, -2.96] vs. -3.10[-3.91, -2.21], p = 0.06) and significantly prolonged delirium-unassessable days on VV-ECMO with a RASS of -4/-5 (23.0[16.3, 38.3] vs. 17.0(6,23), p = 0.03), and total VV-ECMO days (44.5[20.5, 74.3] vs. 27.0[21, 38], p = 0.04). The proportion of delirium-present days correlated with RASS (r = 0.64, p < 0.001), the proportions of days on VV-ECMO with a neuromuscular blocker (r = -0.59, p = 0.001), and with delirium-unassessable exams (r = -0.69, p < 0.001) but not with overall ECMO duration (r = 0.01, p = 0.96). The average daily dosage of delirium-related medications on ECMO days did not differ significantly. On an exploratory multivariable logistic regression, the proportion of delirium days was not associated with mortality. Conclusion: Longer duration of delirium was associated with lighter sedation and shorter paralysis, but it did not discern in-hospital mortality. Future studies should evaluate analgosedation and paralytic strategies to optimize delirium, sedation level, and outcomes.

Experiences with recruitment and retention of adolescents and emerging adults in a weight loss intervention trial.

BACKGROUND/AIMS: Efficient and effective participant recruitment is key for successful clinical research. Adolescent and emerging adult recruitment into clinical trials can be particularly challenging, especially when targeting underrepresented groups. This study aimed to determine the most successful recruitment strategies from those employed during a pediatric trial testing the efficacy of a behavioral intervention on adiposity and cardiovascular disease risk. METHODS: We determined the effectiveness, cost, and diversity of the final research population by each recruitment method utilized in the EMPower trial, a randomized clinical trial designed to test the effect of a technology-delivered behavioral Healthy Lifestyle intervention on adiposity, blood pressure, and left ventricular mass among adolescents and emerging adults with overweight or obesity. Effectiveness was determined by respondent yield (RY; number of respondents/number contacted), scheduled yield (SY; number scheduled for a baseline visit/number of respondents), enrollment yield (EY; number enrolled/number of respondents), and retention (number completed/number enrolled). Cost-effectiveness of each recruitment method was calculated and demographics of participants recruited via each method was determined. RESULTS: A minimum of 109,314 adolescents and emerging adults were contacted by at least one recruitment method (clinic, web-based, postal mailing, electronic medical record (EMR) messaging) leading to 429 respondents. The most successful strategies in terms of RY were clinic-based recruitment (n = 47, 61% RY), community web-postings (n = 109, 5.33% RY), and EMR messaging (n = 163, 0.99% RY); however, website, postal mailings, and EMR recruitment led to more successful SY and EY. Postal mailings were the most costly strategy to employ (US$3261/completed participant) with EMR messaging the second most costly (US$69/completed participant). Community web-postings were free of charge. Clinic-based recruitment did not add additional costs, per se, but did require a substantial amount of personnel time (63.6 h/completed participant). Final cohort diversity primarily came from postal mailings (57% Black) and EMR messages (50% female). CONCLUSION: Electronic medical record messaging and web-based recruitment were highly successful and cost-effective strategies in a pediatric clinical trial targeting adolescents and emerging adults, but was less successful in recruiting a diverse cohort. Clinic recruitment and postal mailings, despite being costly and time-consuming, were the strategies that enrolled a greater proportion of underrepresented groups. While online forms of trial recruitment are growing in popularity, clinic-based recruitment and non-web-based strategies may be required to ensure participant diversity and representation.

Prevention of Tracheostomy-Related Pressure Injury: A Systematic Review and Meta-analysis.

BACKGROUND: In the critical care environment, individuals who undergo tracheostomy are highly susceptible to tracheostomy-related pressure injuries. OBJECTIVE: To evaluate the effectiveness of interventions to reduce tracheostomy-related pressure injury in the critical care setting. METHODS: MEDLINE, Embase, CINAHL, and the Cochrane Library were searched for studies of pediatric or adult patients in intensive care units conducted to evaluate interventions to reduce tracheostomy-related pressure injury. Reviewers independently extracted data on study and patient characteristics, incidence of tracheostomy-related pressure injury, characteristics of the interventions, and outcomes. Study quality was assessed using the Cochrane Collaboration's risk-of-bias criteria. RESULTS: Ten studies (2 randomized clinical trials, 5 quasi-experimental, 3 observational) involving 2023 critically ill adult and pediatric patients met eligibility criteria. The incidence of tracheostomy-related pressure injury was 17.0% before intervention and 3.5% after intervention, a 79% decrease. Pressure injury most commonly involved skin in the peristomal area and under tracheostomy ties and flanges. Interventions to mitigate risk of tracheostomy-related pressure injury included modifications to tracheostomy flange securement with foam collars, hydrophilic dressings, and extended-length tracheostomy tubes. Interventions were often investigated as part of care bundles, and there was limited standardization of interventions between studies. Meta-analysis supported the benefit of hydrophilic dressings under tracheostomy flanges for decreasing tracheostomy-related pressure injury. CONCLUSIONS: Use of hydrophilic dressings and foam collars decreases the incidence of tracheostomy-related pressure injury in critically ill patients. Evidence regarding individual interventions is limited by lack of sensitive measurement tools and by use of bundled interventions. Further research is necessary to delineate optimal interventions for preventing tracheostomy-related pressure injury.

Prevention of Endotracheal Tube-Related Pressure Injury: A Systematic Review and Meta-analysis.

BACKGROUND: Hospital-acquired pressure injuries, including those related to airway devices, are a significant source of morbidity in critically ill patients. OBJECTIVE: To determine the incidence of endotracheal tube-related pressure injuries in critically ill patients and to evaluate the effectiveness of interventions designed to prevent injury. METHODS: MEDLINE, Embase, CINAHL, and the Cochrane Library were searched for studies of pediatric or adult patients in intensive care units that evaluated interventions to reduce endotracheal tube-related pressure injury. Reviewers extracted data on study and patient characteristics, incidence of pressure injury, type and duration of intervention, and outcomes. Risk of bias assessment followed the Cochrane Collaboration's criteria. RESULTS: Twelve studies (5 randomized clinical trials, 3 quasi-experimental, 4 observational) representing 9611 adult and 152 pediatric patients met eligibility criteria. The incidence of pressure injury was 4.2% for orotracheal tubes and 21.1% for nasotracheal tubes. Interventions included anchor devices, serial endotracheal tube assessment or repositioning, and barrier dressings for nasotracheal tubes. Meta-analysis revealed that endotracheal tube stabilization was the most effective individual intervention for preventing pressure injury. Nasal alar barrier dressings decreased the incidence of skin or mucosal injury in patients undergoing nasotracheal intubation, and data on effectiveness of serial assessment and repositioning were inconclusive. CONCLUSIONS: Airway device-related pressure injuries are common in critically ill patients, and patients with nasotracheal tubes are particularly susceptible to iatrogenic harm. Fastening devices and barrier dressings decrease the incidence of injury. Evidence regarding interventions is limited by lack of standardized assessments.

Frailty as a Predictor of Postoperative Outcomes in Invasive Cardiac Surgery: A Systematic Review of Literature.

OBJECTIVES: Frailty is a syndrome characterized by increased vulnerability and reduced ability to maintain homeostasis after stressful events that results in an increased risk for poor outcomes. Frailty screening could potentially be valuable in cardiac surgery risk assessment. The purpose of this review is to evaluate the current literature linking multicomponent frailty assessment and invasive cardiac surgery outcomes. METHODS: We searched PubMed, EMBASE, and CINAHL; 1887 articles met the search criteria, and each was independently reviewed by 2 reviewers. RESULTS: The 19 eligible studies assessed 52 291 subjects using 17 different frailty measurements. The most commonly used instruments were the Fried Frailty Phenotype and the Clinical Frailty Scale. Between 9% and 61% of participants were found to be frail in each study. All 19 studies included mortality as an outcome, 12 included surgical complications, 12 included hospital length of stay, 3 included quality of life, and 2 included functional status. Nine found statistically significant differences in survival between frail and nonfrail patients, 6 of 12 found that frail patients had a longer length of stay, 4 of 12 found that frail patients were more likely to experience major complications, and 2 of 2 found that frail patients were more likely to have a decrease in functional status. CONCLUSION: Although some studies lacked power, the majority confirmed that frail patients are more likely to experience poor outcomes. Further research is needed to determine which frailty measure provides the best predictive validity and to identify interventions to mitigate the risks that major cardiac surgery poses to frail patients.

Population Characteristics and Markers for Withdrawal of Life-Sustaining Therapy in Patients on Extracorporeal Membrane Oxygenation.

OBJECTIVE: As survival with extracorporeal membrane oxygenation (ECMO) therapy improves, it is important to study patients who do not survive secondary to withdrawal of life-sustaining therapy (WLST). The purpose of the present study was to determine the population and clinical characteristics of those who experienced short latency to WLST. DESIGN: Retrospective cohort study. SETTING: Single academic hospital center. PARTICIPANTS: Adult ECMO patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During the study period, 150 patients (mean age 54.8 ± 15.9 y, 43.3% female) underwent ECMO (80% venoarterial ECMO and 20% venovenous ECMO). Seventy-three (48.7%) had WLST from ECMO support (median five days), and 33 of those (45.2%) had early WLST (≤five days). Patients who underwent WLST were older (60.3 ± 15.3 y v 49.6 ± 14.7 y; p < 0.001) than those who did not undergo WLST and had greater body mass index (31.7 ± 7.6 kg/m2v 28.3 ± 5.5 kg/m2; p = 0.002), longer ECMO duration (six v four days; p = 0.01), and higher Acute Physiology and Chronic Health Evaluation (25 v 21; p < 0.001) and Sequential Organ Failure Assessment (12 v 11; p = 0.037) scores. Family request frequently (91.7%) was cited as part of the WLST decision. WLST patients experienced more chaplaincy (89% v 65%; p < 0.001), palliative care consults (53.4% v 29.9%; p = 0.003), and code status change (do not resuscitate: 83.6% v 7.8%; p < 0.001). CONCLUSIONS: Nearly 50% of ECMO patients underwent WLST, with approximately 25% occurring in the first 72 hours. These patients were older, sicker, and experienced a different clinical context. Unlike with other critical illnesses, neurologic injury was not a primary reason for WLST in ECMO patients.

Centralized registry for COVID-19 research recruitment: Design, development, implementation, and preliminary results.

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Recruitment of Black Adults into Cardiovascular Disease Trials.

Background Although disproportionately affected by cardiovascular disease, Black adults remain underrepresented in clinical trials. The National Institutes of Health recommends that studies define goals for recruitment of underrepresented populations. However, the extent to which cardiovascular trials incorporate evidence-based recruitment strategies in their protocols is understudied. Methods and Results We systematically reviewed National Institutes of Health-funded cardiovascular clinical trials registered in ClinicalTrials.gov between 2000 and 2019. Based on publicly available or requested protocols, we focused on enrollment of Black adults as well as the following recruitment strategies: community-based, electronic medical record-based, and provider-based recruitment. A total of 100 clinical trials focused on cardiovascular disease were included in our analysis, of which 62% had published protocols, and 46% of trials had enrolled populations that were <25% Black. In our analysis of available trial protocols, 21% of trials defined a recruitment target for underrepresented groups; however, only one study reported achieving its enrollment goal. While 13% of trial protocols referenced community-based recruitment strategies, 5% explicitly mentioned involving community members in the trial design process. Defining recruitment targets was associated with higher enrollment of Black participants. Conclusions Black adults are underrepresented in National Institutes of Health-funded cardiovascular trials, and the majority of these trials did not specify a Black enrollment target, did not meet targets, and largely did not report specific plans to enroll Black adults in their studies. Future interventions should target trial design and planning phases before study initiation to address these enrollment disparities.