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Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age.

ABSTRACT: This study examined reasons for participation in a genetic study of risk for multiple sclerosis (MS). Our sample consisted of 101 patients diagnosed with MS who were approached about enrolling in the Multiple Sclerosis Genetic Susceptibility Study. Participants were predominantly Hispanic (80%), female (80%), and well educated (71%), having at least some level of college education. Of these 101 individuals who were approached, 95 agreed to participate and are the focus of this report. Among enrollees, the most frequently cited reasons for participation were to find a cure for MS (56%), having MS (46%), and helping future generations (37%). Regression models comparing ethnic groups, Hispanics endorsed having MS as a reason to participate significantly more frequently than non-Hispanics (HI 52%, non-HI 19%, p = 0.015) while non-Hispanics endorsed finding new and better treatments significantly more frequently than Hispanics (Hispanic 17%, non-Hispanic 50%, p = 0.003). Among our three age groups, younger individuals endorsed finding a cure for MS significantly more frequently (74% of 18-35-year olds vs. 56% of 36-55 year olds vs. 39% of >55 year olds). Our results suggest that motivations for participation in genetic research vary by ethnicity, and that these influences need to be considered in developing more inclusive programs of disease-related genetic research. Future efforts should focus on development of standard methods for understanding participation in genetic and genomic research, especially among underrepresented groups as a catalyst for engaging all populations.

SUBMITTER: Cuccaro ML

PROVIDER: S-EPMC7082924 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundAn inability to successfully recruit participants into clinical research has consequences that negatively affect the conduct and reliability of research studies. Understanding facilitators of research participation, namely motives for participation and preferred research outcomes, may improve recruitment and retention of clinical trials related to chronic pain. The present study explored research participation facilitators among individuals with chronic pain and their association with demographic characteristics, pain-related characteristics, and factors related to future research engagement.MethodsIndividuals from Michigan who were 18 years or older and self-reported having chronic pain completed an online survey assessing motives for research participation and desired research outcomes. Analyses were conducted in three stages. First, we evaluated underlying factors of motives for participation and research outcome preferences using principal components analysis. Second, we classified individuals according to their patterns of facilitators using latent profile analysis. Finally, we evaluated differences between facilitator profiles in demographic characteristics, pain-related characteristics, and factors related to future research engagement using χ2 analyses and Kruskal-Wallis rank sum tests.ResultsThree components of motives for research participation were identified: social engagement/enjoyment; pain improvement/advancing science; and compensation. Three components of research outcome preferences were identified: co-occurring symptom reduction; behavior reduction modification; and pain and function improvement. Four potential patient-centered profiles utilizing these dimensions of facilitators were identified that had unique demographic characteristics, research participation willingness, and treatment interest.ConclusionsOur data provide a framework of motives and research outcome preferences that may inform recruitment and retention in chronic pain research. It also gives an indication of who may respond best to active or passive recruitment strategies that appeal to a given motive or preferred outcome. This information may be useful for improving recruitment and to monitor any potential biases in participant samples.

Dataset Information

Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age.

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