Barriers to Enrollment in Rheumatology Research: Who, What, Where, When, and Why?

Abstract

Despite the evidence that complicated rheumatic diseases are more prevalent and severe in ethnic minorities, rheumatology research is afflicted with inadequate patient representation. It is lacking in ethnic and socioeconomic diversity. The objective of this study is to identify barriers to enrollment in rheumatology research and propose possible solutions to overcome these barriers. In this study, 184 patients from two rheumatology clinics (Safety Net clinic, a university-based clinic) were surveyed for concerns regarding participation in clinical research. Patients were asked to rank their top five of eight concerns. Data were then stratified by self-reported ethnicity and clinic site to determine ranking differences in both groups. Fear of risks associated with clinical research was ranked as the primary barrier in all ethnicities. More non-Hispanic Whites (NHW) (24.4%) ranked work responsibilities as a primary barrier compared to Hispanics (10%). Fear of discovering a serious illness as a primary barrier was more frequent at the Safety Net clinic (25%) compared to the university-based clinic (6.3%) and ranked more frequently in the top five in Hispanics compared to NHW. Fears associated with research risks, work responsibilities, and fear of discovering a serious illness were the top-ranked barriers to enrollment in research among patients. However, differences in rankings between ethnicities and clinic sites were identified. This sheds light on the importance of health literacy and the responsibility of researchers in addressing gaps in communication while acknowledging potential cultural components that warrant further investigation.

Keywords: barriers to clinical trials enrollment; clinical research work; perceived barriers; population-based research; rheumatology & autoimmune diseases.

Figure 1. Study questionnaire.