Inequities in Surgical Access for Women With Endometrial Cancer in the United States: Opportunities for Surgical Justice

Abstract

Significant disparities exist in women with endometrial cancer. Disparate incidence and mortality rates affect many populations including racial/ethnic minority women and women who live in rural communities. These populations are more likely to experience delays in care due to multi-dimensional factors ranging from lack of awareness between the women and their non-gynecologic providers to lack of access to health care and/or to gynecologic oncologists. Multiple layers of intervention will be needed to mitigate the inequities, including policy changes, advocacy to change insurance coverage, and network inclusion of gynecologic oncologists. There are opportunities for non-gynecological surgical specialists who take care of women at risk of endometrial cancer to facilitate multidisciplinary care and to refer as appropriately to gynecologic specialty care.

Endometrial cancer (EC), the most common female reproductive tract cancer in the United States, is one of few cancers with increasing incidence and mortality. ¹ For women, EC death is projected to surpass colorectal cancer death by 2040. ² African American women face twice higher mortality rates and the fastest increases in incidence and mortality of all racial/ethnic groups.^1,3,4 Incidences of aggressive histologic subtypes are higher in African American women and both aggressive histologies ⁵ and premenopausal diagnosis of EC are on the rise.^5,6 These trends are expected to continue due to aging population, increasing diversity, ⁵ increasing obesity rates, ⁷ and decreasing hysterectomy rates. ⁸ Population-based screening is not recommended since abnormal bleeding is thought to presage carcinogenesis. However, only 67-71% of women are diagnosed with localized disease, and that rate drops to 55-56% in African American women.^1,3 Currently, only women with known Lynch syndrome, affecting 3-5% of EC, are recommended to undergo screening endometrial biopsies and risk-reducing hysterectomy. Primary treatment of EC is surgery—total hysterectomy and bilateral salpingo-oophorectomy with lymph node assessment, preferably via sentinel node biopsy. Minimally invasive surgery is standard due to superior surgical outcomes and no difference in overall survival and recurrence vs laparotomy.^9,10 Management by gynecologic oncologists (GOs) are considered standard of care for their specialized surgical skills, higher rates of guideline concordant care, and improved survival outcomes. ¹⁰

Several layers of systemic inequities exist for minority women, including low health literacy, low income, no or inadequate insurance coverage or access to coverage, risk of financial toxicity during treatment, and multiple social determinants of health, including access to fresh foods, obesogenic living spaces, environmental exposures, and cultural beliefs on modifiable behaviors. ¹¹ These complex social and systemic barriers interact in ways which become systemic and drive disparities. Utilizing in the schema of Three-Delays barriers, ¹² consider here some of the potential barriers to access for EC which cause delays in detection and quality care.

Delay # 1: Deciding to seek care

Delay # 2: Accessing care

Delay # 3: Receiving appropriate care in an appropriate site

Deciding to seek care requires the following: 1) Health education and literacy, understanding of personal risks, including genetic predisposition, the understanding of potential symptoms (ie, abnormal bleeding), and the potential scope of complications; 2) Trust—believing that care is available, acceptable, accessible, and appropriate; and 3) Decision support—social support, or personal decision support tools. Women with EC who do not have established health care before symptoms experience both significantly delayed care and are diagnosed at advanced stage. ¹³ In a safety net hospital, up to a third of women with EC did not have any health care visit in the preceding year before diagnosis. ¹⁴ Women who are unaware of abnormal bleeding as a sign of EC may inadvertently delay initiation of care. A qualitative study which examined pre-diagnostic experiences of Black women showed women misinterpreted the bleeding symptoms, attempted to self-manage until perceived worsening, and they received vague responses from health care professionals when they disclosed their symptoms, that added to delays in gynecologic care referral. ¹⁵ This highlights need for non-gynecologic providers to be more aware of EC and the symptom alerts.

Accessing care is heavily dependent on socioeconomic means, especially insurance. The Affordable Care Act (ACA) (2020) led to substantial expansion in quality, comprehensive, affordable health care coverage, particularly among low-income and minority populations and today, over 45 million Americans are enrolled in coverage related to the ACA. Recently enacted American Rescue plan (2021) and Inflation Reduction Act (2022), with associated Navigator programs, further strengthened the ACA and resulted in historic highs of 21.4 million Americans covered in the ACA Marketplace, 10 years after its inception. Medicaid expansion, another powerful tool prompted by the ACA to close coverage gaps, has rendered coverage to another 18.6 million Americans. Despite the refusal of some states to fully expand Medicaid under the ACA, all 50 states and the District of Columbia boast substantial reductions in their uninsured rates since 2013, prior to implementation of the ACA. Medicaid expansion increased insurance coverage for women with EC and was associated with a trend toward improved overall survival in the Medicaid expansion states. ¹⁶ As of 2024, 10 states, mostly in the Southeast, have not expanded Medicaid. Consequently, millions of Americans, often with limited economic means and/or in already underserved rural areas, are left with disparately poor access to care. Furthermore, access to a GO was not included in the network adequacy standard for Medicare Advantage plans and 44% of part C bronze plans did not have a GO in network. ¹⁷ Medicaid and private insurance are also not required to have GO in network. In addition, publicly insured women are less likely to receive guideline-concordant care or surgery by a high-volume surgeon and tend to experience more delays in care due to prior authorization process. ¹⁷ Notably, African American women are more likely to be reliant on government insurance due to systemic disparities in income.

Accessing care also requires health care providers and facilities within reasonable distances. Time to surgery (defined as days from definitive diagnosis to surgery) was shown to increase with distance traveled to obtain care ¹⁸ and rural counties are more likely to not have a GO in their local or adjacent counties. ¹⁹ Recent years have seen a trend in rural hospital closures and/or elimination of inpatient and surgical services due to financial pressures and chronic underfunding. Rural hospitals tend to serve a client base that is more reliant on Medicaid and Medicare. These payors typically reimburse hospitals and providers at lower rates than commercial carriers which can add to financial pressures. Over the past decade, two-thirds of rural hospital closures occurred in southern US states, a region in which large populations of African American women live and are disproportionately affected, including by the dearth of Medicaid expansion. Although broadband access challenges remain for many rural areas, telehealth services that grew during the COVID-19 pandemic may provide avenues to increase access. We advocate for the elimination of barriers for tele-consultative services with GOs and genetic counselors via reimbursement restructuring and including peer to peer consultations for management guidance and advice. Some policymakers have proposed workforce incentives like offering loan forgiveness or other financial incentives for GOs and other specialists to practice in rural or underserved areas. And, some states, including Georgia, have invested in increasing Graduate Medical Education programs, particularly in rural and underserved areas. Policies such as the Georgia Rural Hospital Tax Credit program, which allows consumer and corporation tax credits for donating to rural hospitals, may help to improve financial stability for rural hospitals.

Lastly, delay in receiving appropriate care in an appropriate site requires the just and equitable distribution of resources. Minority women are less likely to have their surgical care completed by GOs. ²⁰ Minority women are persistently less likely to undergo hysterectomy at all and are less likely to have minimally invasive surgery or lymph node evaluation, even after correcting for stage and histology. ³ Higher rates of postoperative complications in African American women were attributable to disparity in surgical route. ²¹ Subsequent introduction of sentinel lymph node technique echoed the inequity in access to minimally invasive surgery, where Black, Hispanic, uninsured, rural, or low-income women were less likely to have sentinel node biopsy. ²² This perpetuates the layers of disparities with treatment advancements and new surgical techniques.

We advocate for awareness of EC risk factors among non-gynecological surgeons and would like to discuss opportunities for surgical specialists to facilitate care of women with or at risk of EC. Risk factors to EC include age, obesity, diabetes, unopposed estrogen, nulliparity, chronic anovulation, early menarche, late menopause, infertility, and genetic predisposition such as Lynch and Cowden syndromes. We have previously proposed a simple nomogram to stratify who needs expedited gynecologic care at the point of care based on risk factors and are in the process of validation.^23,24

Surgical specialists are often involved in the care of women germline pathogenic variants. Increasing evidence suggests that women with pathogenic variants of BRCA1 and BRCA2 are at increased risk of EC ²⁵ and may benefit from risk-reducing hysterectomy. Retrospective data showed safety when breast and gynecologic surgeries are completed concurrently. ²⁶ Women with Lynch syndrome have lifetime risk of EC that is greater than 60%. Some women may be candidates for combined risk-reducing hysterectomy at the time of their colectomy for colon cancer. Unlike joint breast and gynecologic surgery, data on combined total hysterectomy and colonic surgery are scant.^26-28 Many patients with cancer and family history that meet guideline criteria do not undergo genetic testing due to lack of awareness and systemic barriers. ²⁹ Prospective cohort study showed universal genetic testing detected more clinically actionable variants than guideline-based approach ³⁰ ; however, this is not practiced widely. Minority patients are more likely to receive variant of uncertain significance in their genetic testing because of their under-representation in genomic databases. This underscores the importance of providing access to genetic research in these populations. ³¹ Another opportunity that is frequently missed are women who would be found to have pathogenic variants through cascade genetic testing prior to personal cancer diagnosis. Significant barriers exist in cascade testing where uptake is low. ²⁹ African American women at a safety net hospital described barriers to cascade testing including lack of awareness, concern about cost of testing, and medical mistrust. ³² The Access to Genetic Counselor Services Act (2021) eliminated need for physician referral to improve access, and genetic counselors are perfect fit for telehealth services; however, continued efforts are needed in raising awareness and mitigation of medical mistrust and other barriers for uptake of genetic testing to improve.

Obesity has long been recognized as a risk factor for the endometrioid subtype of EC, which exhibits the highest relative risk of 7.1 when comparing the class 3 obesity vs normal body mass index. ⁷ Women with obesity often seek surgical care for their increased risks of many surgical problems, including gallbladder diseases, hernias, and joint disease. In a study of women with obesity undergoing bariatric surgery with intact uterus, endometrial biopsy confirmed 10 (14%) women had occult endometrial pathology, either grade 1 endometrioid EC or its precursor, endometrial intraepithelial neoplasia, despite most of the cohort being young premenopausal women. ³³ Three women with endometrial intraepithelial neoplasia who did not have hysterectomy had resolution with successful weight loss at 12-month follow-up. ³³ This presents rationale for collaborative multidisciplinary practices involving care of obese women.

There are significant disparities experienced by marginalized women who are diagnosed with EC. These include delayed recognition of symptoms, lack of access, delayed referral, and inadequate treatments. Community outreach and awareness programs need to emphasize the need for gynecologic evaluation for abnormal bleeding, including irregular and unexplained missed periods. Continued education of all non-gynecological specialists who take care of women at risk for EC is needed to heighten the awareness of risk factors and to stress the importance of timely referrals. Continued efforts on increasing access via affordable insurance, expanding Medicaid, and expanding networks to include GOs, policy changes, and advocacy are urgent and need to continue. Importantly, there are many opportunities for collaborative multidisciplinary intervention trials and clinical management. Continued implementation of these programs and/or enhancement of policies are paramount to the reduction of endometrial cancer disparities and improvement in the overall outcome of women at risk for this significant disease.