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Incidence, prevalence, and trends in endometriosis diagnosis: a United States population-based study from 2006 to 2015

      Background

      Accurate estimates of incidence and prevalence of endometriosis among nonselected cohorts are lacking in the United States, and earlier reports have produced varying results.

      Objective

      This study aimed to define endometriosis incidence and prevalence in a US population and evaluate factors influencing these estimates over time.

      Study Design

      A 10-year retrospective cohort study using Kaiser Permanente Washington electronic health records database was completed. The primary analysis included women enrollees aged 16 to 60 years, from January 2006 to December 2015, who had a uterus, were continuously enrolled for at least 2 years before cohort entry and had at least 1 healthcare utilization. Secondary analysis included all women enrollees aged 16 to 60 years during this time. Incident endometriosis was identified using the International Classification of Diseases, Ninth Revision and Tenth Revision, diagnosis codes. Annual incidence rates were age-adjusted by direct standardization to the 2015 study population. Secular trends in incidence overall and by 5-year age group, race and ethnicity, diagnosis modality, and practitioner type were assessed using Poisson regression analyses. Prevalent cases were defined as women enrolled in 2015 and had an endometriosis diagnosis before the end of 2015. The prevalence rates of chronic pelvic pain and dysmenorrhea defined by the International Classification of Diseases, Ninth Revision and Tenth Revision, diagnosis codes in 2006–2015 were estimated.

      Results

      Among 332,056 eligible women who contributed 1,176,329 person-years during the 10-year study period, 2863 incident endometriosis cases were identified for an average incidence of 24.3 cases per 10,000 person-years. In our primary analysis, incidence rates declined over the study interval from a high of 30.2 per 10,000 person-years in 2006 to 17.4 per 10,000 person-years in 2015 and were highest among women aged 36 to 45 years in most years. Incidence rates were similar across race and ethnicity groups. The distribution of the 2863 incident cases by the diagnosis modality was as follows: 45.5% surgical, 5.7% imaging, and 48.8% clinical. Endometriosis incidence rates per 10,000 person-years were similar in women who were surgically and clinically diagnosed and decreased significantly from 2006 to 2015 (surgically diagnosed endometriosis dropped from 13.4 to 7.4 and clinically diagnosed endometriosis dropped from 16.1 to 8.9; P value of <.001 for linear trend over time for each). Incident case distribution by diagnosing provider was as follows: 73.6% obstetrician and gynecologist, 15.7% primary care provider, and 10.7% “other.” Incidence of endometriosis diagnosed by an obstetrician and gynecologist and primary care provider decreased over the study interval (P<.001 for linear trend over time for each). Method of diagnosis and provider type did not differ by race and ethnicity. Among 135,162 women who contributed person-time in 2015, 2521 women were diagnosed with endometriosis, a prevalence rate of 1.9%. In our secondary analysis, the frequency of chronic pelvic pain diagnosis increased over the study interval from 3.0% in 2006 to 5.6% in 2015.

      Conclusion

      The incidence rates of endometriosis declined over the 10-year study interval and did so uniformly across age groups, races and ethnicities, and the main diagnosing modalities and providers. Declining rates may reflect a shift in practice patterns in the United States away from the diagnosis of endometriosis both clinically and surgically, rather than favoring more general diagnoses of chronic pelvic pain. The prevalence of endometriosis in 2015 in the United States is in keeping with data from recent studies outside the United States using health record data.

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      References

        • Zondervan K.T.
        • Becker C.M.
        • Koga K.
        • Missmer S.A.
        • Taylor R.N.
        • Viganò P.
        Endometriosis.
        Nat Rev Dis Primers. 2018; 4: 9
        • Zondervan K.T.
        • Becker C.M.
        • Missmer S.A.
        Endometriosis.
        N Engl J Med. 2020; 382: 1244-1256
        • Soliman A.M.
        • Surrey E.
        • Bonafede M.
        • Nelson J.K.
        • Castelli-Haley J.
        Real-world evaluation of direct and indirect economic burden among endometriosis patients in the United States.
        Adv Ther. 2018; 35: 408-423
        • Leibson C.L.
        • Good A.E.
        • Hass S.L.
        • et al.
        Incidence and characterization of diagnosed endometriosis in a geographically defined population.
        Fertil Steril. 2004; 82: 314-321
        • Missmer S.A.
        • Hankinson S.E.
        • Spiegelman D.
        • Barbieri R.L.
        • Marshall L.M.
        • Hunter D.J.
        Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors.
        Am J Epidemiol. 2004; 160: 784-796
        • Buck Louis G.M.
        • Hediger M.L.
        • Peterson C.M.
        • et al.
        Incidence of endometriosis by study population and diagnostic method: the endo Study.
        Fertil Steril. 2011; 96: 360-365
        • Abbas S.
        • Ihle P.
        • Köster I.
        • Schubert I.
        Prevalence and incidence of diagnosed endometriosis and risk of endometriosis in patients with endometriosis-related symptoms: findings from a statutory health insurance-based cohort in Germany.
        Eur J Obstet Gynecol Reprod Biol. 2012; 160: 79-83
        • Nagai K.
        • Hayashi K.
        • Yasui T.
        • et al.
        Disease history and risk of comorbidity in women’s life course: a comprehensive analysis of the Japan Nurses’ Health Study baseline survey.
        BMJ Open. 2015; 5e006360
        • Morassutto C.
        • Monasta L.
        • Ricci G.
        • Barbone F.
        • Ronfani L.
        Incidence and estimated prevalence of endometriosis and adenomyosis in Northeast Italy: a data linkage study.
        PLoS One. 2016; 11e0154227
        • Cea Soriano L.
        • López-Garcia E.
        • Schulze-Rath R.
        • Garcia Rodríguez L.A.
        Incidence, treatment and recurrence of endometriosis in a UK-based population analysis using data from the Health Improvement Network and the Hospital Episode Statistics database.
        Eur J Contracept Reprod Health Care. 2017; 22: 334-343
        • Eisenberg V.H.
        • Weil C.
        • Chodick G.
        • Shalev V.
        Epidemiology of endometriosis: a large population-based database study from a healthcare provider with 2 million members.
        BJOG. 2018; 125: 55-62
        • Fuldeore M.J.
        • Soliman A.M.
        Prevalence and symptomatic burden of diagnosed endometriosis in the United States: national estimates from a cross-sectional survey of 59,411 women.
        Gynecol Obstet Investig. 2017; 82: 453-461
        • Saha R.
        • Kuja-Halkola R.
        • Tornvall P.
        • Marions L.
        Reproductive and lifestyle factors associated with endometriosis in a large cross-sectional population sample.
        J Womens Health (Larchmt). 2017; 26: 152-158
        • Harris H.R.
        • Eke A.C.
        • Chavarro J.E.
        • Missmer S.A.
        Fruit and vegetable consumption and risk of endometriosis.
        Hum Reprod. 2018; 33: 715-727
        • Yamamoto A.
        • Harris H.R.
        • Vitonis A.F.
        • Chavarro J.E.
        • Missmer S.A.
        A prospective cohort study of meat and fish consumption and endometriosis risk.
        Am J Obstet Gynecol. 2018; 219: 178.e1-178.e10
        • Reid R.
        • Steel A.
        • Wardle J.
        • et al.
        The prevalence of self-reported diagnosed endometriosis in the Australian population: results from a nationally representative survey.
        BMC Res Notes. 2019; 12: 88
        • Singh S.
        • Soliman A.M.
        • Rahal Y.
        • et al.
        Prevalence, symptomatic burden, and diagnosis of endometriosis in Canada: cross-sectional survey of 30 000 women.
        J Obstet Gynaecol Can. 2020; 42: 829-838
        • Aarestrup J.
        • Jensen B.W.
        • Ulrich L.G.
        • Hartwell D.
        • Trabert B.
        • Baker J.L.
        Birth weight, childhood body mass index and height and risks of endometriosis and adenomyosis.
        Ann Hum Biol. 2020; 47: 173-180
        • Sarria-Santamera A.
        • Orazumbekova B.
        • Terzic M.
        • Issanov A.
        • Chaowen C.
        • Asúnsolo-Del-Barco A.
        Systematic review and meta-analysis of incidence and prevalence of endometriosis.
        Healthcare (Basel). 2020; 9: 29
        • Pugsley Z.
        • Ballard K.
        Management of endometriosis in general practice: the pathway to diagnosis.
        Br J Gen Pract. 2007; 57: 470-476
        • von Theobald P.
        • Cottenet J.
        • Iacobelli S.
        • Quantin C.
        Epidemiology of endometriosis in France: a large, nation-wide study based on hospital discharge data.
        BioMed Res Int. 2016; 2016: 3260952
        • Practice Committee of the American Society for Reproductive Medicine
        Treatment of pelvic pain associated with endometriosis: a committee opinion.
        Fertil Steril. 2014; 101: 927-935
        • Vercellini P.
        • Trespidi L.
        • De Giorgi O.
        • Cortesi I.
        • Parazzini F.
        • Crosignani P.G.
        Endometriosis and pelvic pain: relation to disease stage and localization.
        Fertil Steril. 1996; 65: 299-304
        • Gruppo Italiano per lo Studio dell'Endometriosi
        Relationship between stage, site and morphological characteristics of pelvic endometriosis and pain.
        Hum Reprod. 2001; 16: 2668-2671
        • Strathy J.H.
        • Molgaard C.A.
        • Coulam C.B.
        • Melton L.J.
        Endometriosis and infertility: a laparoscopic study of endometriosis among fertile and infertile women.
        Fertil Steril. 1982; 38: 667-672
        • Mishra V.V.
        • Gaddagi R.A.
        • Aggarwal R.
        • Choudhary S.
        • Sharma U.
        • Patel U.
        Prevalence; characteristics and management of endometriosis amongst infertile women: a one year retrospective study.
        J Clin Diagn Res. 2015; 9: QC01-QC03
        • Mishra V.V.
        • Bandwal P.
        • Agarwal R.
        • Aggarwal R.
        Prevalence, clinical and laparoscopic features of endometriosis among infertile women.
        J Obstet Gynaecol India. 2017; 67: 208-212
        • Hager M.
        • Wenzl R.
        • Riesenhuber S.
        • et al.
        The prevalence of incidental endometriosis in women undergoing laparoscopic ovarian drilling for clomiphene-resistant polycystic ovary syndrome: a retrospective cohort study and meta-analysis.
        J Clin Med. 2019; 8: 1210
        • Apostolopoulos N.V.
        • Alexandraki K.I.
        • Gorry A.
        • Coker A.
        Association between chronic pelvic pain symptoms and the presence of endometriosis.
        Arch Gynecol Obstet. 2016; 293: 439-445
        • Mowers E.L.
        • Lim C.S.
        • Skinner B.
        • et al.
        Prevalence of endometriosis during abdominal or laparoscopic hysterectomy for chronic pelvic pain.
        Obstet Gynecol. 2016; 127: 1045-1053
        • Al-Jefout M.
        • Alnawaiseh N.
        • Yaghi S.
        • Alqaisi A.
        Prevalence of endometriosis and its symptoms among young Jordanian women with chronic pelvic pain refractory to conventional therapy.
        J Obstet Gynaecol Can. 2018; 40: 165-170
        • Bougie O.
        • Yap M.I.
        • Sikora L.
        • Flaxman T.
        • Singh S.
        Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta-analysis.
        BJOG. 2019; 126: 1104-1115
        • Yu O.
        • Scholes D.
        • Schulze-Rath R.
        • Grafton J.
        • Hansen K.
        • Reed S.D.
        A US population-based study of uterine fibroid diagnosis incidence, trends, and prevalence: 2005 through 2014.
        Am J Obstet Gynecol. 2018; 219: 591.e1-591.e8
        • Doll K.M.
        Investigating black-white disparities in gynecologic oncology: theories, conceptual models, and applications.
        Gynecol Oncol. 2018; 149: 78-83
        • Breiman L.
        Classification and regression trees.
        1st ed. Routledge, Boca Raton, Florida1984
        • Boyle P.
        • Parkin D.M.
        Cancer registration: principles and methods. Statistical methods for registries.
        IARC Sci Publ. 1991; 95: 126-158
        • Parazzini F.
        • Roncella E.
        • Cipriani S.
        • et al.
        The frequency of endometriosis in the general and selected populations: a systematic review.
        J Endometr Pelvic Pain Disord. 2020; 12: 176-189
        • Bleich S.N.
        • Jarlenski M.P.
        • Bell C.N.
        • LaVeist T.A.
        Health inequalities: trends, progress, and policy.
        Annu Rev Public Health. 2012; 33: 7-40
        • Yao M.
        • Hu T.
        • Wang Y.
        • Du Y.
        • Hu C.
        • Wu R.
        Polychlorinated biphenyls and its potential role in endometriosis.
        Environ Pollut. 2017; 229: 837-845
        • Strang J.
        • Volkow N.D.
        • Degenhardt L.
        • et al.
        Opioid use disorder.
        Nat Rev Dis Primers. 2020; 6: 3
        • As-Sanie S.
        • Black R.
        • Giudice L.C.
        • et al.
        Assessing research gaps and unmet needs in endometriosis.
        Am J Obstet Gynecol. 2019; 221: 86-94
        • O’Malley K.J.
        • Cook K.F.
        • Price M.D.
        • Wildes K.R.
        • Hurdle J.F.
        • Ashton C.M.
        Measuring diagnoses: ICD code accuracy.
        Health Serv Res. 2005; 40: 1620-1639
        • Surrey E.
        • Taylor H.S.
        • Giudice L.
        • et al.
        Long-term outcomes of elagolix in women with endometriosis: results From two extension studies.
        Obstet Gynecol. 2018; 132: 147-160