Federally Funded Pelvic Floor Disorder Research Underreports and Inadequately Includes Women of Varied Race and Ethnicity

Author Type(s)

Faculty

Document Type

Abstract

Publication Date

6-2021

Journal Title

American Journal of Obstetrics and Gynecology

Department

Obstetrics and Gynecology

Abstract

Objectives

Inclusion of participants of color and varied ethnicity is a priority of federally sponsored research. Our objective was to describe the reporting of race and ethnicity in federally funded research published by the NICHD-funded Pelvic Floor Disorders Network (PFDN).

Materials and Methods

Data from PFDN publications were extracted regarding whether race or ethnicity were reported. The number of participants included in each manuscript who were identified as White, Black, Asian, Native American, and “other” and the number that were identified of Hispanic ethnicity were recorded. Data were analyzed by publication and by pelvic floor disorder (PFD) condition investigated, including urinary incontinence (UI), pelvic organ prolapse (POP), and fecal incontinence (FI), pregnancy-related PFDs, or multiple PFDs. Many publications reported on overlapping patient populations. Therefore, we analyzed the data both by counting participants every time they were reported (participants reported or PRs) and by counting unique participants in original trials (primary paper published).

Results

One hundred thirty-two PFDN publications were published between 2003 and 2020. Of these, 21 were excluded as they were methods papers or described research without participants. Of the 111 remaining articles, 90 (81%) included descriptions of race and 55 (50%) of ethnicity. All 13 primary trials described race, and 10/13 (76.9%) described ethnicity. Of those publications describing race, 50/90 (56%) included only the descriptors White, Black, and “other”, and 14/90 (16%) only described the percentage of White patients. Of 49,218 PRs, there were 43,058 (87%) with reporting of race and 27,468 (56%) with reporting of ethnicity. Among PRs with race and ethnicity reported, 79% were reported as White, 9.9% Black, 0.4% Asian, 0.1% Native American, and 4% “other”; 13% were of Hispanic ethnicity. There were 3,906 unique patients in primary studies, all of which had race reported and 3,337 (85.4%) had ethnicity reported. Ethnic distribution was similar between the unique patients and PRs (P=0.09), but racial distribution was different (P<0.01). Table 1 displays the racial and ethnic distribution by type of PFD being studied of PRs and unique participants in the original trials. The racial and ethnic diversity by analysis of PRs and by analysis of unique patients was varied based on PFD study topic (P<0.01). These differences were driven by pregnancy-related and FI studies having lower proportions of White patients than studies of other PFDs.

Conclusion

Federally funded PFDN research does not consistently report race and ethnicity of participants, and even in those that report these characteristics, women of color and Hispanic ethnicity are underrepresented. Consistent reporting and recruitment of diverse women is needed to address this systemic inequity.

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