Race and Ethnicity Affects Care for Patients with Endometriosis

Healthcare disparities have been widely documented in recent years, and continue to receive increasing attention with the aim of improving equity of care. Results of a recent national study illuminate differences in gynecologic treatment of patients based on race and ethnicity.

The Cleveland Clinic research used data from the American College of Surgeons National Surgical Quality Improvement Program to identify women in the United States who underwent surgical interventions for endometriosis between 2010 and 2018. The study, published by the American Journal of Obstetrics and Gynecology in January 2022, found that race and ethnicity were associated with increased rates of perioperative complications and open surgeries.

Examination of data from 11,936 patients revealed that complication rates were elevated in those who were Hispanic, Black, Native Hawaiian, Pacific Islander, American Indian or Alaska Native. Complication rates ranged from as low as 8.3% in white and Asian patients to as high as 19.7% in Native Hawaiian or Pacific Islander and American Indian or Alaska native women. Bowel injury and reoperation were significantly higher among Black than white patients, and cystotomy was higher in Hispanic than white patients.

Additionally, patients from those groups were more likely than white patients to have had open surgeries. Being Hispanic or Black also was associated with increased chance of receiving laparotomy for nonhysterectomy procedures. And the likelihood of undergoing oophorectomy increased for Hispanic or Black women, especially at younger ages.

Megan Orlando, MD, a fellow in Cleveland Clinic’s Ob/Gyn & Women’s Health Institute, was lead author on the study.

The issue of racial and ethnic bias in healthcare is large and complex, but coauthors Linda Bradley, MD, Miguel Luna, MD, and Elliott Richards, MD agree that making improvements requires efforts by both healthcare providers and patients.

How the medical community can change

“We need to do better as a medical community,” says Dr. Richards. “This issue calls for introspection by gynecologic surgeons and training programs. This finding is a call to action for better training addressing inequities and disparities in the quality of care.”

He says he was most disturbed by the rate of oophorectomies: 3.7% in white patients, and higher among all other categories, topping out at 8.8% for Hispanic patients.

“With endometriosis, if a woman has extensive disease, it is often easier for the surgeon to just take the ovary out,” Dr. Richards says. “If this is done without considering the alternatives, you have to wonder – are physicians devaluing the reproductive potential of certain women because of an implicit bias?”

Fertility-sparing treatment options should be discussed with patients across the board, including those with limited access to specialized care, says Dr. Luna. “It is important to be aware whether we are counseling women more aggressively because of their race or status,” he says.

How patients can support change

Patients can be important advocates for their own healthcare, Dr. Bradley says. That begins with knowing their own bodies and medical histories, and extends to feeling confident about insisting on being heard by their healthcare providers.

Dr. Luna agrees. “Patients should feel empowered to ask questions like ‘What are my options?’ and ‘Can you offer these treatments?’ or ‘Can you refer me to another center?’” he says. He also recommends patients join social media advocacy groups where they can talk with others who have gone through the same experience.

The reasons behind the numbers

In general, some of the challenges to care equity for endometriosis are understood to include patients’ diminished access to high-volume surgeons and surgery centers as well as lack of timely treatment, Dr. Bradley says. “Black and brown women are under-diagnosed for endometriosis,” she says. “It is often diagnosed as pelvic inflammatory disease instead.”

While bias is considered a likely contributor to the problem of disparity, the national database is limited in details and scope, she adds.

“This definitely requires follow-up studies,” Dr. Bradley says. “It is a topic we are all very passionate about.”