Endometriosis is an estrogen-dependent disease affecting 10% of females in which endometrial-like tissue grows outside the uterus, resulting in pain, infertility, and physical and psychosocial dysfunction. Prior research documenting diagnostic error reports a 6.7-year mean diagnostic delay. This study takes a patient-oriented approach and aims to complement prior research on diagnostic error by examining patient-reported experiences with misdiagnosis.
Data were part of a larger online survey comprising nonrandomly sampled patients with self-reported surgically confirmed endometriosis (n = 758). We examined patients’ reports of misdiagnosis, to which healthcare professionals (HCPs) they attributed misdiagnosis, mean diagnostic delay, and endometriosis symptoms and physical sites predicting misdiagnosis reports.
Mean reported diagnostic delay was 8.6 years. 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) and most frequently by gynecologists (53.2%) followed by general practitioners (34.4%). Higher odds of reporting a physical or mental health misdiagnosis was associated with reports of virtually all symptoms and endometriosis on the bladder, small bowel, pelvic sidewall, and rectum. Higher odds of reporting a physical health misdiagnosis was exclusively associated with reports of endometriosis on the appendix. Higher odds of reporting a mental health misdiagnosis was exclusively associated with reports of a younger symptom onset age; endometriosis on the diaphragm, large bowel, lung, and ureter; and comorbid adenomyosis diagnosis.
Endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error, establish the first patient-reported incidence, and further demonstrate value in including patients in diagnostic error research.
We thank Heather C. Guidone, BCPA, Surgical Program Director, Center for Endometriosis Care, Atlanta, GA, and Jeffrey T. Arrington, MD, FACOG, ACGE, Endometriosis Surgeon/Center for Endometriosis Care, Atlanta, GA for the medical review and providing important suggestions for improvement of the early stages of this manuscript. We thank Katherine (Katya) Ognyanova, PhD, Rutgers University, for her supervision in the study design and implementation of this research. We also thank the Endometriosis Foundation of America, the Endometriosis Research Center, Endometriosis Network Canada, and Endometriosis Association Ireland for their recruitment efforts and advertisement of the larger research study. Last, we thank all the endometriosis patients for their time and participation in this research.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
1. Giudice LC. Endometriosis. N Engl J Med 2010;362:2389–98.10.1056/NEJMcp1000274Search in Google Scholar PubMed PubMed Central
2. Shafrir AL, Farland LV, Shah DK, Harris HR, Kvaskoff M, Zondervan K, et al. Risk for and consequences of endometriosis: a critical epidemiologic review. Best Pract Res Clin Obstet Gynaecol 2018;1:1–5.10.1016/j.bpobgyn.2018.06.001Search in Google Scholar PubMed
3. Tabibian N, Swehli E, Boyd A, Umbreen A, Tabibian JH. Abdominal adhesions: a practical review of an often overlooked entity. Ann Med Surg 2017;15:9–13.10.1016/j.amsu.2017.01.021Search in Google Scholar PubMed PubMed Central
4. Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, et al. The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Hum Reprod Update 2013;19:625–39.10.1093/humupd/dmt027Search in Google Scholar PubMed
5. Nnoaham KE, Hummelshoj L, Webster P, d’Hooghe T, de Cicco Nardone F, de Cicco Nardone C, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96:366–73.10.1016/j.fertnstert.2011.05.090Search in Google Scholar PubMed PubMed Central
6. Donaldson MS, Corrigan JM, Kohn LT, editors. To err is human: building a safer health system, (vol. 6). Washington, DC: National Academies Press, 2000:312.Search in Google Scholar
7. Elstein A. Clinical reasoning in medicine. In: Higgs J, editor. Clinical reasoning in the health professions. Oxford, England: Butterworth-Heinemann Ltd., 1995:49–59.Search in Google Scholar
8. Graber ML. The incidence of diagnostic error in medicine. Br Med J Qual Saf 2013;22(Suppl 2):ii21–7.10.1136/bmjqs-2012-001615Search in Google Scholar PubMed PubMed Central
9. Newman-Toker DE, Pronovost PJ. Diagnostic errors – the next frontier for patient safety. J Am Med Assoc 2009;301:1060–2.10.1001/jama.2009.249Search in Google Scholar PubMed
10. Society to Improve Diagnosis in Medicine. Coalition to improve diagnosis. https://www.improvediagnosis.org/cid/. Accessed: 20 Jan 2019.Search in Google Scholar
11. Brady J, Khanna G. Agency for Healthcare Research and Quality. Improving diagnosis: a vital patient safety frontier. 2019. https://www.ahrq.gov/news/blog/ahrqviews/vital-patient-safety-frontier.htmlAccessed: 28 Jul 2019.Search in Google Scholar
12. Hart JT. Clinical and economic consequences of patients as producers. J Public Health 1995;17:383–6.Search in Google Scholar
13. Schiff GD, Martin SA, Eidelman DH, Volk LA, Ruan E, Cassel C, et al. Ten principles for more conservative, care-full diagnosis. Ann Intern Med 2018;169:643–5.10.7326/M18-1468Search in Google Scholar PubMed
14. Giardina TD, Haskell H, Menon S, Hallisy J, Southwick FS, Sarkar U, et al. Learning from patients’ experiences related to diagnostic errors is essential for progress in patient safety. Health Aff 2018;37:1821–7.10.1377/hlthaff.2018.0698Search in Google Scholar PubMed PubMed Central
15. McDonald KM, Bryce CL, Graber ML. The patient is in: patient involvement strategies for diagnostic error mitigation. BMJ Qual Saf 2013;22:ii33–9.10.1136/bmjqs-2012-001623Search in Google Scholar PubMed PubMed Central
16. McDonald KM. The diagnostic field’s players and interactions: from the inside out. Diagnosis 2014;1:55–8.10.1515/dx-2013-0023Search in Google Scholar PubMed
17. National Academies of Sciences, Engineering, and Medicine. Improving diagnosis in health care. Washington, DC: National Academies Press, 2015.Search in Google Scholar
18. Simoens S, Hummelshoj L, D’Hooghe T. Endometriosis: cost estimates and methodological perspective. Hum Reprod Update 2007;13:395–404.10.1093/humupd/dmm010Search in Google Scholar PubMed
19. IBM Corp. IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp, 2017.Search in Google Scholar
20. Hummelshoj L, Prentice A, Groothuis P. Update on endometriosis. Women’s Health 2006;2:53–6.10.2217/17455057.2.1.53Search in Google Scholar PubMed
21. Chi MT, Glaser R, Farr MJ. The nature of expertise. Hillsdale, NJ: Erlbaum, 1988:470.Search in Google Scholar
22. Ericsson KA. Deliberate practice and acquisition of expert performance: a general overview. Acad Emerg Med 2008;15:988–94.10.1111/j.1553-2712.2008.00227.xSearch in Google Scholar PubMed
23. Graber ML, Kissam S, Payne VL, Meyer AN, Sorensen A, Lenfestey N, et al. Cognitive interventions to reduce diagnostic error: a narrative review. Br Med J Qual Saf 2012;21:535–57.10.1136/bmjqs-2011-000149Search in Google Scholar PubMed
24. Klein G. Sources of power: how people make decisions. Cambridge, MA: MIT Press, 1999:330.Search in Google Scholar
25. Zale M, Lambert E, Lanoue M, Leader A. (forthcoming). Shedding light on endometriosis: patient and provider perspectives on a challenging disease. J Endometr Pelvic Pain Disord.10.1177/2284026520905239Search in Google Scholar
26. Heritage J, McArthur A. The diagnostic moment: a study of US primary care. Soc Sci Med 2019;228:262–71.10.1016/j.socscimed.2019.03.022Search in Google Scholar PubMed
27. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5. Washington, DC: American Psychiatric Association, 2013.10.1176/appi.books.9780890425596Search in Google Scholar
28. Cox H, Henderson L, Andersen N, Cagliarini G, Ski C. Focus group study of endometriosis: struggle, loss and the medical merry-go-round. Int J Nurs Pract 2003;9:2–9.10.1046/j.1440-172X.2003.00396.xSearch in Google Scholar PubMed
29. Denny E. ‘You are one of the unlucky ones’: delay in the diagnosis of endometriosis. Diversity Health Soc Care 2004;1:39–44.Search in Google Scholar
30. Markovic M, Manderson L, Warren N. Endurance and contest: women’s narratives of endometriosis. Health 2008;3:349–67.10.1177/1363459308090053Search in Google Scholar PubMed
31. Saber Tehrani AS, Lee H, Mathews SC, Shore A, Makary MA, Pronovost PJ, et al. 25-Year summary of US malpractice claims for diagnostic errors 1986–2010: an analysis from the National Practitioner Data Bank. Br Med J Qual Saf 2013;22:672–80.10.1136/bmjqs-2012-001550Search in Google Scholar PubMed
32. Newman-Toker DE, Schaffer AC, Yu-Moe CW, Nassery N, TehraniAS, Clemens GD, et al. Serious misdiagnosis-related harms in malpractice claims: the “Big Three” – vascular events, infections, and cancers. Diagnosis 2019;6:227–40.10.1515/dx-2019-0019Search in Google Scholar PubMed
33. Hickson GB, Clayton EW, Entman SS, Miller CS, Githens PB, Whetten-Goldstein K, et al. Obstetricians’ prior malpractice experience and patients’ satisfaction with care. J Am Med Assoc 1994;272:1583–7.10.1001/jama.1994.03520200039032Search in Google Scholar
34. Levinson W, Roter DL, Mullooly JP, Dull VT, Frankel RM.Physician-patient communication: the relationship with malpractice claims among primary care physicians and surgeons. J Am Med Assoc 1997;277:553–9.10.1097/00132586-199712000-00064Search in Google Scholar
35. Stelfox HT, Gandhi TK, Orav EJ, Gustafson ML. The relation of patient satisfaction with complaints against physicians and malpractice lawsuits. Am J Med 2005;118:1126–33.10.1016/j.amjmed.2005.01.060Search in Google Scholar PubMed
36. Dancet EA, Apers S, Kremer JA, Nelen WL, Sermeus W, D’Hooghe TM. The patient-centeredness of endometriosis care and targets for improvement: a systematic review. Gynecol Obstet Invest 2014;78:69–80.10.1159/000358392Search in Google Scholar PubMed
©2020 Walter de Gruyter GmbH, Berlin/Boston