Abstract

Endometriosis affects 6-10% of reproductive-age women, costing the United States (US) an estimated $22 billion in direct costs each year. Despite this substantial burden, research into the quality of endometriosis care is scarce. To identify opportunities to improve the quality of endometriosis care in the US, a review of existing quality measures, indicators, and quality improvement initiatives for endometriosis care was conducted. Targeted literature searches were conducted in PubMed, Google, Google Scholar, and National Guideline Clearinghouse for the period of January 2003 to May 2018. Search strings were used to identify relevant guidelines, quality indicators, and quality initiatives for endometriosis care (e.g., endometriosis, women’s health, quality indicator, measure, quality initiative). Quality measures were also queried using Avalere’s Quality Measures NavigatorTM. Websites of relevant professional societies, patient advocacy groups, and government-sponsored agencies were also searched. Findings were reported descriptively. No quality measures addressing treatment or pain management for endometriosis were identified. However, 50 quality indicators for endometriosis care were identified. Most were developed by the European Society of Human Reproduction and Embryology or the National Institute for Health and Care Excellence; only 7 were developed in the US. The identified indicators address diagnosis, treatment/procedures, and management. A significant proportion (30%) addresses general health and quality of life for endometriosis patients (including pain or bleeding). A majority (72%) do not have full specifications or have not been tested. Only 4 quality improvement initiatives in the US dedicated to education or management of endometriosis symptoms were identified. Despite existing indicators that could potentially improve care processes and pain management for women with endometriosis, none seem widely adopted in the US. Testing of viable indicators and refining assessment tools to optimize treatment and pain management may help advance care for women with endometriosis.

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