Taking a patient-centered approach could help overcome a historical racial bias in the U.S. that endometriosis mostly affects white women and improve overall patient management, a study suggests.
The study titled, “Behind the Times: Revisiting Endometriosis and Race,” appeared in the American Journal of Obstetrics & Gynecology.
A higher incidence of endometriosis in white, middle-class women was suggested as early as 1941, due to the racial and socioeconomic status of patients seen in private practice in the U.S. at the time. In addition, a 1951 study found that endometriosis was nearly non-existent among African-American patients, which suggests there was a “constitutional racial factor.”
However, another study published in 1951 challenged this view by reporting that private and ward patients had similar rates of endometriosis. Other studies showed near identical rates in white and black patients, but the idea that endometriosis is a middle-class disorder has persisted.
The ways in which racial bias has impacted patient care was addressed by African-American gynecologist Donald L. Chatman in 1976. He noted that although 1 in 5 of his private practice African-American patients had evidence of endometriosis, 40% of these women had been misdiagnosed with pelvic inflammatory disease. Chatman argued that this was due to the myth that non-whites were immune to this disease and that African-American women were more promiscuous.
More recent studies on race and endometriosis have found a lower prevalence of endometriosis in black women than in white women. However, factors such having a surgical diagnosis, and different access to health care may lead to biased conclusions.
Starting in the 1980s, there was a shift in endometriosis research towards finding genetic and environmental factors and including explicit statements against racial disparity in the diagnosis of endometriosis. Despite these efforts, an “implicit bias suggesting that this disease is more common in white women who delay childbearing is likely still present among the medical community,” wrote scientists from Queen’s University and the University of Ottawa, in Canada.
The researchers believe that lack of diversity in study populations helps to perpetuate this notion. First, little effort has been made to study whether different ethnic groups have distinct symptoms, which is especially relevant because pelvic pain is markedly influenced by psychosocial factors. Second, studies on women of different races and ethnicity are still lacking. And third, socioeconomic status may be a confounding factor in studies of race and endometriosis, as it “likely influences access to care, specialist referral, diagnosis, and treatment offered,” the researchers said.
“As we strive to improve patient care, we want to acknowledge the lesson we have learned from history,” the team wrote, noting that endometriosis can affect women of any race, and that those of different ethnicities “may have different presenting symptoms of endometriosis and express different treatment preferences.”
Therefore, the researchers proposed that studies should focus on symptoms and disease experience “using validated and culturally sensitive patient outcome measures.”
“We advocate for adaptation of an individualized and patient centered approach” for more accurate and timely diagnosis, and to improve patient management, they added.