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A qualitative study in the Journal of Racial and Ethnic Health Disparities has concluded that ethnic and racial considerations can have significant impact on patient experience of uterine fibroid (UF) diagnosis and management.
In partnership with The Fibroid Foundation, a patient education and support charity, the authors explored the experiences of patients with UFs with the goal of facilitating improvements to care and patient support. The authors argue for more attention to how ethnoracial factors can impact the quality and experience of UF diagnosis and treatment.
According to The Fibroid Foundation, as many as 80% of Black women will experience fibroids at some time in their lives. “But the experience of Black women with fibroids are underreported in the academic literature,” said principal investigator Megan Allyse, PhD, an associate professor of biomedical ethics at Mayo Clinic in Jacksonville, Florida. “There is also a general lack of attention to how gynecological conditions affect the quality of women’s lives beyond symptom management.”
Women of color described significant stronger impacts of UF symptoms on their daily lives, “especially when they did not have insurance, could not take time off work or did not have a doctor they trusted,” Allyse told Contemporary OB/GYN®.
Several women of color described feeling that their doctors provided less or lower quality care because of their race or socioeconomic status. In particular, women often described feeling that they were disproportionately steered toward certain treatment options, such as hysterectomy, because of their race/ethnicity.
“Furthermore, women talked about familial and cultural factors that influenced their entry into care,” Allyse said. “In families where mothers and grandmothers have experienced fibroids, heavy bleeding can become normalized and women do not always seek care until their fibroids are further along. Educating young women about what to expect of their menstrual cycles could help women enter care sooner and with less disease burden.”
The authors noted that their outcomes are unsurprising in the context of a long-standing history of racial discrimination in gynecological care, the minimization of female pain and lack of universal access to health insurance. “We need better education for current and future healthcare providers about the unique disease burden of uterine fibroids among women of color,” Allyse said. “Several women described going to the emergency room with severe fibroid symptoms and being sent home by providers who were not well versed in the signs and symptoms of fibroids. As a result, these women suffered for longer before getting care.”
Allyse said it is unfortunate that women of color continue to have experiences of disparate care. “Especially after the events of 2020, it is essential to be aware of the ethnoracial factors and their intersection with social determinants of health that may impede access to care,” she said. “We need active interventions to address disparities.”
This pilot study was qualitative in nature and thus used a small sample size. Based on the findings, the authors advocate for larger studies that can determine whether these experiences are shared by a significant portion of UF patients.
The authors also acknowledge possible selection bias in the study. Women with more negative experiences may have been more likely to participate. Also, because social media accounts of The Fibroid Foundation were used to recruit participants, this may have excluded women who have less access to the internet or who are not involved with social media or patient support.
The authors hope that their research amplifies the voices and experiences of women of color suffering from uterine fibroids, thereby resulting in “greater awareness and improved patient support of this important, and often undervalued, area of women’s health,” Allyse said.
Allyse reports no relevant financial disclosures.
Orellana M, Riggan KA, Dsouza K, et al. Perceptions of ethnoracial factors in the management and treatment of uterine fibroids. J Racial Ethn Health Disparities. Published online May 19, 2021. doi:10.1007/s40615-021-01059-8