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Inadequacy and underreporting of study subjects’ race and ethnicity in federally funded pelvic floor research
American Journal of Obstetrics and Gynecology ( IF 9.8 ) Pub Date : 2021-08-28 , DOI: 10.1016/j.ajog.2021.08.036
Cara L Grimes 1 , Camille A Clare 2 , Kate V Meriwether 3 , Katherine Husk 4 , Rebecca G Rogers 4
Affiliation  

Background

The inclusion of participants who are Black, Indigenous people of color, and participants of various ethnicities is a priority of federally sponsored research.

Objective

This study aimed to describe the reporting of race and ethnicity in federally funded research published by the Eunice Kennedy Shriver National Institute of Child Health and Human Development–funded Pelvic Floor Disorders Network.

Study Design

Pelvic Floor Disorders Network publications were reviewed to determine whether race or ethnicity was reported. The number of participants included in each manuscript who were identified as White, Black, Asian, American Indian or Alaska Native, Native Hawaiian or Other Pacific Islander, and “other,” and the number of participants who identified as having Hispanic ethnicity were recorded. Data were analyzed by publication and by the pelvic floor disorder investigated, including urinary incontinence, pelvic organ prolapse, fecal incontinence, pregnancy-related pelvic floor disorders, and multiple pelvic floor disorders. Many publications reported on overlapping patient populations, which included primary trials and secondary analyses and studies. Data were analyzed both by counting participants every time they were reported in all papers and by counting the unique number of participants in only the original trials (primary paper published).

Results

A total of 132 Pelvic Floor Disorders Network publications were published between 2003 and 2020. Of these, 21 were excluded because they were methods papers or described research without participants. Of the 111 remaining articles, 90 (81%) included descriptions of race and 55 (50%) included descriptions of ethnicity. All 13 primary trials described race and 10 of 13 (76.9%) described ethnicity. Of those publications that described race, 50 of 90 (56%) included only the categories of “White,” “Black,” and “Other,” and 14 of 90 (16%) only described the percentage of White patients. Of the 49,218 subjects, there were 43,058 (87%) with reported race and 27,468 (56%) with reported ethnicity. Among subjects with race and ethnicity reported, 79% were reported as White, 9.9% as Black, 0.4% as Asian, 0.1% as American Indian or Alaska Native, and 4% as “other,” whereas 13% were reported to be of Hispanic ethnicity. The racial and ethnic diversity varied based on the pelvic floor disorder studied (P<.01), which was driven by pregnancy-related and fecal incontinence studies because these had lower proportions of White patients than studies of other pelvic floor disorders.

Conclusion

Federally funded Pelvic Floor Disorders Network research does not consistently report the race and ethnicity of participants. Even in the publications that report these characteristics, Black, Indigenous people of color, and people of Hispanic ethnicity are underrepresented. Consistent reporting and recruitment of a diverse population of women is necessary to address this systemic inequity.



中文翻译:

联邦资助的盆底研究中研究对象种族和民族的不足和报告不足

背景

包括黑人、有色人种土著人和不同种族的参与者是联邦政府资助研究的优先事项。

客观的

本研究旨在描述联邦资助的研究报告种族和民族,该研究由Eunice Kennedy Shriver国家儿童健康与人类发展研究所资助的盆底疾病网络发表。

学习规划

审查骨盆底疾病网络出版物以确定是否报告了种族或民族。记录在每份手稿中被确定为白人、黑人、亚洲人、美洲印第安人或阿拉斯加原住民、夏威夷原住民或其他太平洋岛民和“其他”的参与者人数,以及被确定为西班牙裔的参与者人数。通过出版物和调查的盆底疾病对数据进行分析,包括尿失禁、盆腔器官脱垂、大便失禁、妊娠相关的盆底疾病和多发性盆底疾病。许多出版物报道了重叠的患者群体,其中包括初级试验和次级分析和研究。

结果

2003 年至 2020 年间,总共发表了 132 篇盆底疾病网络出版物。其中 21 篇被排除在外,因为它们是方法论文或没有参与者的描述研究。在剩余的 111 篇文章中,90 篇(81%)包括种族描述,55 篇(50%)包括种族描述。所有 13 项主要试验都描述了种族,13 项中的 10 项 (76.9%) 描述了种族。在描述种族的出版物中,90 篇中的 50 篇 (56%) 仅包含“白人”、“黑人”和“其他”类别,而 90 篇中的 14 篇 (16%) 仅描述了白人患者的百分比。在 49,218 名受试者中,有 43,058 (87%) 名报告种族和 27,468 (56%) 名报告种族。在报告种族和民族的受试者中,79% 被报告为白人,9.9% 为黑人,0.4% 为亚洲人,0.1% 为美洲印第安人或阿拉斯加原住民,4% 为“其他”,而 13% 被报告为西班牙裔。种族和民族多样性因所研究的盆底疾病而异(P <.01),这是由妊娠相关和大便失禁研究驱动的,因为这些研究中白人患者的比例低于其他盆底疾病的研究。

结论

联邦资助的盆底疾病网络研究并未始终如一地报告参与者的种族和民族。即使在报道这些特征的出版物中,黑人、有色人种和西班牙裔人的代表性也不足。为了解决这种系统性的不平等,有必要对不同的女性群体进行一致的报告和招募。

更新日期:2021-10-29
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