Exploring Willingness to Participate in Clinical Trials by Ethnicity

Pariera, Katrina L.; Murphy, Sheila T.; Meng, Jingbo; McLaughlin, Margaret L.

doi:10.1007/s40615-016-0280-6

Cited by 36 publications

(49 citation statements)

References 30 publications

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“…Despite low levels of engagement, the poll also found that 56% of Hispanics said that the opportunity to improve the health of others is a very important reason to take part in a clinical trial and 81% said that they would likely participate in a clinical trial if recommended by a doctor (Research!America, ). Lack of trust has been cited as a major factor in lack of participation in clinical trials among Hispanics (Arevalo et al, ; Byrne, Tannenbaum, Glück, Hurley, & Antoni, ; Pariera, Murphy, Meng, & McLaughlin, ). However, some researchers have found that low participation in cancer clinical trials among non‐English–speaking Hispanics may be related to lack of information and language barriers, not lack of willingness to participate in research (Arevalo et al, ; Bryne et al, ; Nodora, Nuño, O'Day, Yrun, & Garcia, ; Pariera et al, ).…”

Section: Introductionmentioning

confidence: 99%

A mixed‐methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican‐Americans at‐risk for autosomal dominant Alzheimer’s disease

Withers

Sayegh

Rodríguez-Agudelo

et al. 2019

Journal of Genetic Counseling

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Trials to prevent autosomal dominantly inherited Alzheimer's disease (ADAD) are critical and timely. However, cultural beliefs about AD and genetic testing may preclude informed consent and participation, especially among racial/ethnic minorities. This mixed‐methods study examines cultural beliefs about AD and genetic screening among at‐risk populations of Mexican heritage. We surveyed 86 Mexican and 37 Mexican‐American family members of patients with ADAD and interviewed 18 respondents in Mexico to explore perceptions and knowledge regarding AD and genetic testing. While most respondents understood that AD is inherited in their families, they also had limited understanding of the genetic mechanisms behind AD. Many believed that AD is a normal part of aging or that it is a mental illness caused by bad habits. However, beliefs that AD is caused by a curse or God's will were uncommon. The interviews demonstrated that very few at‐risk respondents understood their own risk for harboring the mutation causing AD in their family. Once informed, most expressed a strong interest in genetic testing, largely motivated by the desire to be better prepared for the development of AD. Health professionals treating and investigators enrolling members from families with ADAD cannot assume that they fully understand the nature of the illness; therefore, providers should provide comprehensive information about ADAD and genetic testing.

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Section: Introductionmentioning

confidence: 99%

A mixed‐methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican‐Americans at‐risk for autosomal dominant Alzheimer’s disease

Withers

Sayegh

Rodríguez-Agudelo

et al. 2019

Journal of Genetic Counseling

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“…11,12 There are multiple reasons minorities have been underrepresented in intervention studies. 12,13 For example, in the black community, there is a long documented history of a distrust of research and the health care system. 13,14 Research that includes a sufficient number of ethnic minority cancer survivor populations is crucial to addressing the disparities in health outcomes observed across race, ethnicity, and socioeconomic status.…”

Section: Introductionmentioning

confidence: 99%

Strategic recruitment of an ethnically diverse cohort of overweight survivors of breast cancer with lymphedema

Hackley

Fornash

Dean

et al. 2017

Cancer

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BACKGROUND: Black women are more likely to experience adverse effects from cancer treatment such as lymphedema. Thus, black women may particularly benefit from research regarding interventions to improve lymphedema. Herein, the authors report the challenges and strategies related to the recruitment of minority survivors of breast cancer and to the recruitment of survivors of breast cancer with lymphedema into the Women In Steady Exercise Research (WISER) Survivor Clinical Trial. METHODS: Subjects for this community-based trial were recruited from the Philadelphia area through active (mailings) and passive (printed materials and Web site) recruitment strategies. In addition, education sessions coordinated through partner hospitals in communities with a predominantly minority population were conducted to increase awareness of lymphedema in survivors of breast cancer. Women who were interested in the study were screened for lymphedema via telephone questionnaire and invited to see a study-related certified lymphedema therapist to confirm the presence of lymphedema. RESULTS: Screening was conducted among 2295 women: 628 were eligible, 450 consented, and 351 were randomized. Minority women comprised 38% of the study population. Letters to women on state and hospital registries resulted in a 0.4% randomization rate; education sessions yielded a 10% randomization rate. The authors observed that approximately 23.6% of the study sample had no previous diagnosis of lymphedema. CONCLUSIONS: The WISER Survivor Clinical Trial faced multiple recruitment challenges and used unique strategies to successfully enroll minority survivors of breast cancer into a lifestyle intervention. Cancer 2018;124:95-104.

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“…44 Respondents were less likely to be recruited to a study if they were black or if they were classified as middle income. 44 Several other studies have also shown that patient age, 45 education level, 46 and ethnicity 47 influence likelihood of enrollment. Our study collected demographic data but was unable to look specifically at subgroups because of low response rates.…”

Section: Demographic Factors Influencing Participationmentioning

confidence: 94%

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease

et al. 2020

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Objective: Patients diagnosed with peripheral artery disease are difficult to recruit into clinical trials. However, there is currently no high-quality, patient-centered information explaining why peripheral artery disease patients choose to participate or not participate in clinical research studies. Methods: The current study was a prospective community engagement initiative that specifically asked patients with and without peripheral artery disease: (1) what motivates them to participate in clinical research studies, (2) their willingness to participate in different research procedures, (3) the barriers to participation, (4) preferences about study design, and (5) demographic and disease-related factors influencing participation. Data were gathered through focus groups ( n = 19, participants aged 55–79 years) and mailed questionnaires ( n = 438, respondents aged 18–85 years). Results: More than half of the respondents stated that they would be willing to participate in a study during evening or weekend time slots. Peripheral artery disease patients ( n = 45) were more willing than those without peripheral artery disease ( n = 360) to participate in drug infusion studies (48% versus 18%, p < 0.001) and trials of investigational drugs (44% versus 21%, p < 0.001). Motivating factors and barriers to participation were largely consistent with previous studies. Conclusion: Adults in our geographic region are interested in participating in clinical research studies related to their health; they would like their doctor to tell them what studies they qualify for and they prefer to receive a one-page advertisement that has color pictures of the research procedures. Peripheral artery disease patients are more willing than those without peripheral artery disease to participate in drug infusion studies, trials of investigational drugs, microneurography, and spinal/epidural infusions.

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Exploring Willingness to Participate in Clinical Trials by Ethnicity

Cited by 36 publications

References 30 publications

A mixed‐methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican‐Americans at‐risk for autosomal dominant Alzheimer’s disease

A mixed‐methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican‐Americans at‐risk for autosomal dominant Alzheimer’s disease

Strategic recruitment of an ethnically diverse cohort of overweight survivors of breast cancer with lymphedema

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease

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