Endometriosis Care Quality Reform in the United States

Proposal Calls for Accredited Endometriosis Centers to Improve Outcomes and Equity

Key Points

Highlight:

• Significant structural gaps exist in U.S. endometriosis care, including long diagnostic delays, inadequate training, inequitable access, and major reimbursement disparities.
• Authors propose establishing an Endometriosis Care Quality Collaborative (ECQC) to define, accredit, and elevate centers of expertise nationwide.

Importance:

• A national quality framework could provide the infrastructure needed to standardize training, improve surgical outcomes, and guide research and policy reform.

What's Done Here?

• This is a narrative, systems-based review of medical education, clinical care patterns, reimbursement structures, and health inequities affecting people with endometriosis in the U.S.
• The authors synthesize evidence on diagnostic delays, disparities in access to high-volume surgery, inadequate residency/fellowship training, and financial disincentives in Current Procedural Terminology (CPT)/International Classification of Diseases (ICD) coding.
• Based on this analysis, they outline a multi-year plan to establish and accredit U.S. centers of expertise under an ECQC model.

Key Results:

• Over 60% of primary-care physicians feel uncomfortable diagnosing or managing endometriosis.
• Residency and fellowship pathways show major training gaps, especially in fertility-sparing surgery and chronic pelvic pain management.
• People of color experience poorer outcomes, reduced access to expert surgeons, and higher surgical complication rates.
• CPT codes undervalue endometriosis surgery, offering only one surgical code regardless of disease severity or operative complexity, contributing to limited availability of high-volume surgeons.
• ICD updates in 2022 improved lesion-level coding, but reimbursement misalignment persists.
• An ECQC structure could support accreditation, data collection, training standards, and advocacy efforts.

Strengths and Limitations:

• Comprehensive synthesis of medical, ethical, economic, and equity-related barriers to endometriosis care in the U.S., providing a compelling rationale for a national quality framework are strengths of the study.
• As a narrative proposal without empirical evaluation, the recommendations require future validation, formal stakeholder consensus, and implementation studies; which are the limitations.

From the Editor-in-Chief – EndoNews

"This important analysis highlights a persistent gap in the structure of endometriosis care across the United States—namely, the absence of a unified, high-quality, and measurable care framework. By demonstrating that delayed diagnosis, fragmented care pathways, and inconsistent access to multidisciplinary expertise remain widespread, the authors underscore a systemic problem that cannot be solved by clinical excellence alone. It requires coordinated models, standard-setting, and accountability.

A crucial next step is the globalization of this effort. Endometriosis is not a geographically limited condition, and the challenges described—diagnostic delay, limited access to advanced surgery, insufficient integration of pain specialists, fertility experts, pelvic floor therapists, radiologists, psychologists, and primary care—are shared worldwide. What this work reveals is not solely a U.S. problem but a global one, calling for an internationally harmonized framework for quality metrics, care processes, and outcomes reporting.

Equally important, any future care model must be comprehensive and explicitly multidisciplinary. Endometriosis care does not reside in a single specialty. It spans gynecology, minimally invasive surgery, reproductive endocrinology, radiology and MRI expertise, pathology, pain medicine, urology, colorectal surgery, psychology, physical therapy, nursing, and primary care. A high-performing system should integrate all of these disciplines, with contributions from each reflected in quality measures, diagnostic pathways, and outcome metrics.

In this sense, the authors’ work is a valuable catalyst. It illustrates why endometriosis care needs structured quality models and why such frameworks must be built collaboratively, tested internationally, and governed transparently. The field is ready for a shared global standard—and studies like this move us closer."

Lay Summary

Endometriosis care in the United States varies widely depending on where and how patients receive treatment, according to a new analysis published in Journal of Minimally Invasive Gynecology.

A national multidisciplinary committee—the Endometriosis Care Quality Collaborative (ECQC)—brought together gynecologic surgeons, pain specialists, primary-care physicians, physical therapists, mental-health experts, and patients to identify which measures best reflect quality care for people living with endometriosis.

Using a structured decision-making process, the committee evaluated more than 200 potential quality indicators across diagnosis, treatment, symptom management, fertility, psychosocial support, and long-term outcomes. The experts ultimately agreed on a set of priority measures that could be used to assess whether patients are receiving timely, coordinated, evidence-aligned care.

The work highlights major gaps in current U.S. endometriosis care: inconsistent symptom evaluation, variability in access to minimally invasive specialists, lack of standardized referral pathways, limited integration of pelvic-floor physical therapy, and insufficient measurement of quality-of-life outcomes.

The ECQC emphasizes that improving endometriosis care will require system-level changes—not just individual clinicians—including better data collection, multidisciplinary collaboration, and national benchmarks that reflect patients’ real experiences.

This initiative was led by Ted Lee, MD (Taskforce Chair) from NYU, together with a diverse panel of clinicians and patient-advocates. Their goal is to create a framework that health systems, payers, and policymakers can use to reduce disparities and raise the overall standard of endometriosis care across the country.

Research Source: https://pubmed.ncbi.nlm.nih.gov/41067567/