Barriers and enablers to cancer clinical trial participation and initiatives to improve opportunities for rural cancer patients: A scoping review

McPhee, Narelle; Nightingale, Claire; Harris, S.J.; Segelov, Eva; Ristevski, Eli

doi:10.1177/17407745221090733

Cited by 12 publications

(17 citation statements)

References 86 publications

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“…Therefore, clinicians in routine practice are forced to extrapolate trial outcomes into untested populations 6–8 . There can also be important differences in socio‐demographic factors among those who participate in clinical trials, including higher education, socioeconomic status, and the likelihood of living in an urban location 9,10 . Health care system and provider characteristics may also differ between clinical trials and real‐world populations.…”

Section: End Point Definition Trial Data Source Real‐world Data Sourc...mentioning

confidence: 99%

“…[6][7][8] There can also be important differences in socio-demographic factors among those who participate in clinical trials, including higher education, socioeconomic status, and the likelihood of living in an urban location. 9,10 Health care system and provider characteristics may also differ between clinical trials and real-world populations. Clinical trials mandate close monitoring, frequent imaging, and blood work, and close contact is maintained throughout the study between the participant, nursing, and medical team.…”

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confidence: 99%

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Efficacy‐effectiveness gaps in oncology: Looking beyond survival

Wilson,

Hanna,

Booth

2023

Cancer

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The efficacy‐effectiveness (EE) gap describes the differences in survival seen in clinical trials and routine clinical practice, where patients in real‐world practice often have inferior outcomes compared to trial populations. However, EE gaps may exist beyond survival outcomes, including gaps in quality of life, toxicity, cost‐effectiveness, and patient time, and these EE gaps should also influence patient and clinician treatment decisions. Failure to clearly acknowledge these EE gaps may cause patients, clinicians, and health care systems to have unrealistic expectations of the benefits of therapy across a range of important clinical and economic domains. In this commentary, the authors review the evidence supporting the existence of EE gaps in quality of life, time toxicity, cost and toxicities, and urge for further research into this important topic.

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Section: End Point Definition Trial Data Source Real‐world Data Sourc...mentioning

confidence: 99%

mentioning

confidence: 99%

Efficacy‐effectiveness gaps in oncology: Looking beyond survival

Wilson,

Hanna,

Booth

2023

Cancer

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“…Disparities are noted at eligibility, interest in participation and actual enrollment ( 14 ). There are many established reasons for lower enrollment of these groups, including transportation, cost, trust in medical system, and patient knowledge or comprehension of the research ( 15 ), and multi-level interventions are needed to increase enrollment of underrepresented populations ( 16 ).…”

Section: Introductionmentioning

confidence: 99%

Integrating primary care, shared decision making, and community engagement to facilitate equitable access to multi-cancer early detection clinical trials

Thompson,

Buchanan,

Myers

et al. 2024

Front. Oncol.

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Effective implementation of cancer screening programs can reduce disease-specific incidence and mortality. Screening is currently recommended for breast, cervical, colorectal and lung cancer. However, initial and repeat adherence to screening tests in accordance with current guidelines is sub-optimal, with the lowest rates observed in historically underserved groups. If used in concert with recommended cancer screening tests, new biospecimen-based multi-cancer early detection (MCED) tests could help to identify more cancers that may be amendable to effective treatment. Clinical trials designed to assess the safety and efficacy of MCED tests to assess their potential for reducing cancer mortality are needed and many are underway. In the conduct of MCED test trials, it is crucial that participant recruitment efforts successfully engage participants from diverse populations experiencing cancer disparities. Strategic partnerships involving health systems, clinical practices, and communities can increase the reach of MCED trial recruitment efforts among populations experiencing disparities. This goal can be achieved by developing health system-based learning communities that build understanding of and trust in biomedical research; and by applying innovative methods for identifying eligible trial patients, educating potential participants about research trials, and engaging eligible individuals in shared decision making (SDM) about trial participation. This article describes how a developing consortium of health systems has used this approach to encourage the uptake of cancer screening in a wide range of populations and how such a strategy can facilitate the enrollment of persons from diverse patient and community populations in MCED trials.

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“…4 Several barriers may influence individuals’ decision to participate in clinical trials, including trial design features, participation costs, or travel distance to the research facility. 5,6 Poor communication about clinical trials with potential participants has emerged as an additional critical barrier to enrollment. 7,8 The Health Interview National Trends Survey (HINTS) is a nationwide study that has been administered annually or biannually in the United States since 2003 and is designed to facilitate research into the relationships between communication practices and health-related knowledge and perceptions.…”

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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Barriers and enablers to cancer clinical trial participation and initiatives to improve opportunities for rural cancer patients: A scoping review

Cited by 12 publications

References 86 publications

Efficacy‐effectiveness gaps in oncology: Looking beyond survival

Efficacy‐effectiveness gaps in oncology: Looking beyond survival

Integrating primary care, shared decision making, and community engagement to facilitate equitable access to multi-cancer early detection clinical trials

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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