Dataset Information

Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups.

ABSTRACT:

Background

For unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance.

Methods

Members of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations.

Results

We included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research.

Conclusions

We found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.

SUBMITTER: Pimentel Maldonado DA

PROVIDER: S-EPMC8405146 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundStudies using local samples suggest that racial minorities anticipate a greater preference for life-sustaining treatment when faced with a terminal illness. These studies are limited by size, representation, and insufficient exploration of sociocultural covariables.ObjectiveTo explore racial and ethnic differences in concerns and preferences for medical treatment at the end of life in a national sample, adjusting for sociocultural covariables.DesignDual-language (English/Spanish), mixed-mode (telephone/mail) survey.ParticipantsA total of 2,847 of 4,610 eligible community-dwelling Medicare beneficiaries age 65 or older on July 1, 2003 (62% response).MeasurementsDemographics, education, financial strain, health status, social networks, perceptions of health-care access, quality, and the effectiveness of mechanical ventilation (MV), and concerns and preferences for medical care in the event the respondent had a serious illness and less than 1 year to live.ResultsRespondents included 85% non-Hispanic whites, 4.6% Hispanics, 6.3% blacks, and 4.2% "other" race/ethnicity. More blacks (18%) and Hispanics (15%) than whites (8%) want to die in the hospital; more blacks (28%) and Hispanics (21.2%) than whites (15%) want life-prolonging drugs that make them feel worse all the time; fewer blacks (49%) and Hispanics (57%) than whites (74%) want potentially life-shortening palliative drugs, and more blacks (24%, 36%) and Hispanics (22%, 29%) than whites (13%, 21%) want MV for life extension of 1 week or 1 month, respectively. In multivariable analyses, sociodemographic variables, preference for specialists, and an overly optimistic belief in the effectiveness of MV explained some of the greater preferences for life-sustaining drugs and mechanical ventilation among non-whites. Black race remained an independent predictor of concern about receiving too much treatment [adjusted OR = 2.0 (1.5-2.7)], preference for dying in a hospital [AOR = 2.3 (1.6-3.2)], receiving life-prolonging drugs [1.9 (1.4-2.6)], MV for 1 week [2.3 (1.6-3.3)] or 1 month's [2.1 (1.6-2.9)] life extension, and a preference not to take potentially life-shortening palliative drugs [0.4 (0.3-0.5)]. Hispanic ethnicity remained an independent predictor of preference for dying in the hospital [2.2 (1.3-4.0)] and against potentially life-shortening palliative drugs [0.5 (0.3-0.7)].ConclusionsGreater preference for intensive treatment near the end of life among minority elders is not explained fully by confounding sociocultural variables. Still, most Medicare beneficiaries in all race/ethnic groups prefer not to die in the hospital, to receive life-prolonging drugs that make them feel worse all the time, or to receive MV.