Exploring willingness of elder Chinese in Houston to participate in clinical research

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Abstract

Background and objectives

Inadequate minority participation in clinical research can threaten the applicability and strength of scientific findings. Previous research suggests that trial participation rates are lowest among Asian Americans, compared to other groups. This study explored barriers to clinical research participation among elder Chinese living in Houston, Texas. Additionally we administered the Trust in Medical Researchers Scale (TIMRS), used previously in researching trust in medical researchers as related to research participation.

Design

In this mixed methods study, a semi-structured interview, including the TIMRS were administered to 30 adults of Chinese ancestry aged 50 years or older recruited from a Chinese community center. Interviews were conducted in English, Mandarin and Cantonese and independently coded and analyzed using thematic content analysis. TIMRS scores were calculated for participants.

Results

Participants were 70% female, 70% were 60 or elder, all were foreign born and on average lived in the US for 21.8 years. Participants perceived risks to research participation and preferred language concordant research staff. Interviewees were more willing to participate if they perceived personal and community health-related benefits. The overall TIMRS score was 23.9 (±5.0), lower than the overall TIMRS for Whites in a previous study (P < 0.001).

Conclusions

The barriers and facilitators to research participation confirmed previous research among Asians. Our participant TIMRS scores were consistent with decreased levels of trust observed in the original TIMRS study for African Americans as compared and lower than Whites. Employing strategies that utilize language concordant staff who build trust with participants may aid in recruiting elder Chinese, especially if the research is personally relevant to those being recruited.

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Most cited references 42

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Race, gender, and partnership in the patient-physician relationship.

Lisa Cooper-Patrick (1999)

Many studies have documented race and gender differences in health care received by patients. However, few studies have related differences in the quality of interpersonal care to patient and physician race and gender. To describe how the race/ethnicity and gender of patients and physicians are associated with physicians' participatory decision-making (PDM) styles. Telephone survey conducted between November 1996 and June 1998 of 1816 adults aged 18 to 65 years (mean age, 41 years) who had recently attended 1 of 32 primary care practices associated with a large mixed-model managed care organization in an urban setting. Sixty-six percent of patients surveyed were female, 43% were white, and 45% were African American. The physician sample (n = 64) was 63% male, with 56% white, and 25% African American. Patients' ratings of their physicians' PDM style on a 100-point scale. African American patients rated their visits as significantly less participatory than whites in models adjusting for patient age, gender, education, marital status, health status, and length of the patient-physician relationship (mean [SE] PDM score, 58.0 [1.2] vs 60.6 [3.3]; P = .03). Ratings of minority and white physicians did not differ with respect to PDM style (adjusted mean [SE] PDM score for African Americans, 59.2 [1.7] vs whites, 61.7 [3.1]; P = .13). Patients in race-concordant relationships with their physicians rated their visits as significantly more participatory than patients in race-discordant relationships (difference [SE], 2.6 [1.1]; P = .02). Patients of female physicians had more participatory visits (adjusted mean [SE] PDM score for female, 62.4 [1.3] vs male, 59.5 [3.1]; P = .03), but gender concordance between physicians and patients was not significantly related to PDM score (unadjusted mean [SE] PDM score, 76.0 [1.0] for concordant vs 74.5 [0.9] for discordant; P = .12). Patient satisfaction was highly associated with PDM score within all race/ethnicity groups. Our data suggest that African American patients rate their visits with physicians as less participatory than whites. However, patients seeing physicians of their own race rate their physicians' decision-making styles as more participatory. Improving cross-cultural communication between primary care physicians and patients and providing patients with access to a diverse group of physicians may lead to more patient involvement in care, higher levels of patient satisfaction, and better health outcomes.

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Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

Jean Ford, Mollie W Howerton, Gabriel Lai … (2008)

Racial and ethnic minorities, older adults, rural residents, and individuals of low socioeconomic status are underrepresented among participants in cancer-related trials. The authors conducted a systematic review to determine the barriers to participation of underrepresented populations in cancer-related trials. Their search included English-language publications that reported original data on the recruitment of underrepresented groups to cancer treatment or prevention trials between 1966 and December 2005 in multiple electronic databases. They also hand-searched titles in 34 journals from January 2003 to December 2005 and they examined reference lists for eligible articles. Titles and abstracts were reviewed to identify relevant studies. Data on barriers to participation were synthesized both qualitatively and based on statistically significant associations with trial enrollment. Of 5257 studies that were cited, 65 studies were eligible for inclusion in the current analysis, including 46 studies on recruitment into cancer therapeutic trials, 15 studies on recruitment into prevention trials, and 4 studies on recruitment into both prevention and treatment trials. Numerous factors were reported as barriers to participation in cancer-related trials. However, only 20 of the studies reported statistically significant associations between hypothesized barriers and enrollment. The available evidence had limitations in quality regarding representativeness, justification of study methods, the reliability and validity of data-collection methods, potential for bias, and data analysis. The results indicated that underrepresented populations face numerous barriers to participation in cancer-related trials. The current systematic review highlighting the literature on recruitment of underrepresented populations to cancer trials and may be used as the evidence base toward developing an agenda for etiologic and intervention research to reduce the disparities in participation in cancer-related trials.

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Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors.

Edward Mills, Dugald Seely, Beth Rachlis … (2006)

Enrolling participants onto clinical trials of cancer presents an important challenge. We aimed to identify the concerns of patients with cancer about, and the barriers to, participation in clinical trials. We did a systematic review to assess studies of barriers to participation in experimental trials and randomised trials for validity and content. We estimated the frequency with which patients identified particular issues by pooling across studies that presented data for barriers to participation in clinical trials as proportions. We analysed 12 qualitative studies (n=722) and 21 quantitative studies (n=5452). Two qualitative studies inquired of patients who were currently enrolled onto clinical trials, and ten inquired of patients who were eligible for enrolment onto various clinical trials. Barriers to participation in clinical trials were protocol-related, patient-related, or physician-related. The most common reasons cited as barriers included: concerns with the trial setting; a dislike of randomisation; general discomfort with the research process; complexity and stringency of the protocol; presence of a placebo or no-treatment group; potential side-effects; being unaware of trial opportunities; the idea that clinical trials are not appropriate for serious diseases; fear that trial involvement would have a negative effect on the relationship with their physician; and their physician's attitudes towards the trial. Meta-analysis confirmed the findings of our systematic review. The identification of such barriers to the participation in clinical trials should help trialists to develop strategies that will keep to a maximum participation and cooperation in cancer trials, while informing and protecting prospective participants adequately.

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Author and article information

Contributors

Logan R. Thornton

Rossybelle P. Amorrortu

Daniel W. Smith

Arch G. Mainous III

Sally W. Vernon

Barbara C. Tilley

Journal

Journal ID (nlm-ta): Contemp Clin Trials Commun

Journal ID (iso-abbrev): Contemp Clin Trials Commun

Title: Contemporary Clinical Trials Communications

Publisher: Elsevier

ISSN (Electronic): 2451-8654

Publication date PMC-release: 24 June 2016

Publication date Collection: 15 December 2016

Publication date (Electronic): 24 June 2016

Volume: 4

Pages: 33-38

Affiliations

[a ]The University of Texas Health Science Center at Houston (UT Health) School of Public Health, Department of Health Promotion and Behavioral Sciences, 1200 Hermann Pressler, Houston, TX, 77030, USA

[b ]The University of Texas Health Science Center at Houston (UT Health) School of Public Health, Department of Biostatistics, 1200 Hermann Pressler, Houston, TX, 77030, USA

[c ]Medical University of South Carolina, Department of Psychiatry and Behavioral Sciences, 100 Doughty Street, Charleston, SC, 29425, USA

[d ]University of Florida, Department of Health Services Research, Management and Policy, Health Science Center, PO Box 100195, Gainesville, FL, 32610, USA

Author notes

[∗ ]Corresponding author. 1200 Binz Street, Suite 730, Houston, TX, 77004, USA. Logan.R.Thornton@ 123456uth.tmc.edu

Article

Publisher ID: S2451-8654(16)30011-4

DOI: 10.1016/j.conctc.2016.06.006

PMC ID: 4957552

PubMed ID: 27458608

SO-VID: 2db6e83f-1430-4236-8161-8e8ebd5a90d6

License:

This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

History

Date received : 8 February 2016

Date revision received : 11 May 2016

Date accepted : 22 June 2016

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Exploring willingness of elder Chinese in Houston to participate in clinical research

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Abstract

Background and objectives

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Related collections

Transnational Chinese identity

Most cited references 42

Race, gender, and partnership in the patient-physician relationship.

Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors.

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