Prevalence and correlates of invitation to participate in clinical trials among US adults

Occa, Aurora; Leip, Allison; Merritt, Allison; Stapleton, Jerod L.

doi:10.1016/j.pmedr.2022.101742

Cited by 8 publications

(8 citation statements)

References 25 publications

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“…The authors reported that South Asian participants were systematically excluded from trials because of the increased cost, time, and resources associated with their inclusion. 27 Similarly, in a recent study, the prevalence and correlates of invitation to participate in clinical trials among a nationally representative sample of US adults showed Asian respondents had the lowest prevalence of invitation (2%)—a trend persistent from prior such analyses. 28 Addressing language barriers to enrollment is likely to have the most immediate yield on enrollment of Asian participants in nephrology trials and might mirror the widespread availability of language services commonly used in hospital care.…”

Section: Discussionmentioning

confidence: 93%

Representation of Racial and Ethnic Minorities in Nephrology Clinical Trials: A Systematic Review and Meta-Analysis

Soomro¹,

McCarthy²,

Varela³

et al. 2023

JASN

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Significance statement Racial and ethnic disparities in clinical trial enrollment are well described. However, whether these disparities are present in nephrology randomized clinical trials has not been previously reported. We performed a systematic review and meta-analysis of 380 randomized clinical trials involving different aspects of kidney disease published between 2000 and 2021. Our results indicate that worldwide reporting of race and ethnicity is poor and that White individuals account for most of the randomized participants with decreased enrollment of Black participants in more recent trials. However, trials conducted in the United States have representation of Black and Hispanic participants consistent with the population prevalence of disease and under-representation of Asian participants. Background Under-representation of racial and ethnic minorities in clinical trials could worsen disparities, but reporting and enrollment practices in nephrology randomized clinical trials have not been described. Methods PubMed was searched to capture randomized clinical trials for five kidney disease–related conditions published between 2000 and 2021 in ten high-impact journals. We excluded trials with <50 participants and pilot trials. Outcomes of interest were the proportion of trials reporting race and ethnicity and the proportions of enrolled participants in each race and ethnicity category. Results Among 380 trials worldwide, race was reported in just over half and ethnicity in 12%. Most enrolled participants were White, and Black individuals accounted for ≤10% of participants except in dialysis trials where they accounted for 26% of participants. However, Black participants were enrolled at high proportions relative to disease and population prevalence in US CKD, dialysis, and transplant trials representing 19% of participants in AKI, 26% in CKD, 44% in GN, 40% in dialysis, and 26% in transplant trials. Enrollment of Asian participants was low worldwide except in GN trials with marked under-representation in US CKD, dialysis, and transplant trials. Hispanic individuals represented only 13% of participants in US dialysis trials compared with 29% of US dialysis population. Conclusion More complete reporting of race and ethnicity in nephrology trials is needed. Black and Hispanic patients are well-represented in kidney disease trials in the United States. Asian patients are poorly represented in kidney trials both globally and in the United States.

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Section: Discussionmentioning

confidence: 93%

Representation of Racial and Ethnic Minorities in Nephrology Clinical Trials: A Systematic Review and Meta-Analysis

Soomro¹,

McCarthy²,

Varela³

et al. 2023

JASN

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“…This in turn leads to a sub-optimal level of health literacy, i.e., their understanding and knowledge of their disease condition and medications. Limited awareness of clinical research and its relevance have also been reported as deterrents to research interest and participation in a few studies (29)(30)(31)(32)(33)(34).…”

Section: Barriers To Conducting Field-based Research During the Covid...mentioning

confidence: 99%

Field based research in the era of the pandemic in resource limited settings: challenges and lessons for the future

Mulchandani,

Lyngdoh,

Gandotra

et al. 2024

Front. Public Health

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The coronavirus pandemic that began in December 2019, has had an unprecedented impact on the global economy, health systems and infrastructure, in addition to being responsible for significant mortality and morbidity worldwide. The “new normal” has brought along, unforeseen challenges for the scientific community, owing to obstructions in conducting field-based research in lieu of minimizing exposure through in-person contact. This has had greater ramifications for the LMICs, adding to the already existing concerns. As a response to COVID-19 related movement restrictions, public health researchers across countries had to switch to remote data collections methods. However, impediments like lack of awareness and skepticism among participants, dependence on paper-based prescriptions, dearth of digitized patient records, gaps in connectivity, reliance on smart phones, concerns with participant privacy at home and greater loss to follow-up act as hurdles to carrying out a research study virtually, especially in resource-limited settings. Promoting health literacy through science communication, ensuring digitization of health records in hospitals, and employing measures to encourage research participation among the general public are some steps to tackle barriers to remote research in the long term. COVID-19 may not be a health emergency anymore, but we are not immune to future pandemics. A more holistic approach to research by turning obstacles into opportunities will not just ensure a more comprehensive public health response in the coming time, but also bolster the existing infrastructure for a stronger healthcare system for countries.

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“…7,8 First, healthcare providers and clinical researchers rarely invite patients to join clinical trials. 11 They are reluctant to talk with patients about clinical trials for a variety of reasons, including the intrinsic uncertainty of the research inquiry, the fear of damaging relationships with their patients, and implicit bias. 12 Many healthcare providers also lament limited time during medical appointments and a lack of resources available to support challenging discussions 13,14 as reasons for limited conversations about joining clinical trials.…”

Section: Introductionmentioning

confidence: 99%

What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey

Occa,

Merritt,

Leip

et al. 2023

Clinical Trials

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Background Using information and communication technologies to seek, discuss, and share health-related information influences people’s trust and knowledge of several health practices. However, we know little about the associations between individuals’ information and communication technology use and their perceptions of trust and knowledge of clinical trials. Examining these associations may lead to the identification of target audiences and channels for developing effective educational interventions and campaigns about clinical trials. Methods In this study, we analyzed Health Information National Trends Survey data to document perceptions of clinical trial-related knowledge and trust that were recently added as questions in this annual national survey of US adults. We also examined correlates of these clinical trial perceptions that included sociodemographic factors and individuals’ use of information and communication technologies to seek health information, discuss such information with their healthcare providers, and share the information in their network. Results More than 90% of participants had no or limited perceived knowledge about clinical trials. Knowledge was higher among those who seek or discuss health-related information online. Differences in perceived knowledge and trust emerged for some racial/ethnic subgroups and other demographic factors. Providers were considered the most trusted source of information (73.6%), followed by health organizations (19.4%) and social support (7.1%). Trust in health organizations compared to health providers was higher among those who used online resources to share health information online with others. Trust in social support was significantly higher among those who used information and communication technologies to communicate about health. Conclusion Based on these findings, we recommend developing online resources about clinical trials to be distributed through social media. These resources should facilitate a dialogue and be targeted to several groups considering their information and communication technologies’ use.

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Prevalence and correlates of invitation to participate in clinical trials among US adults

Cited by 8 publications

References 25 publications

Representation of Racial and Ethnic Minorities in Nephrology Clinical Trials: A Systematic Review and Meta-Analysis

Representation of Racial and Ethnic Minorities in Nephrology Clinical Trials: A Systematic Review and Meta-Analysis

Field based research in the era of the pandemic in resource limited settings: challenges and lessons for the future

What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey

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