Persistent diagnostic delays for endometriosis reported

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A new study highlights that endometriosis diagnosis takes an average of 5 to 12 years, underscoring the need for improved diagnostic approaches to address patient suffering and health care burdens.

Persistent diagnostic delays for endometriosis reported | Image Credit: © rocketclips - © rocketclips - stock.adobe.com.

Persistent diagnostic delays for endometriosis reported | Image Credit: © rocketclips - © rocketclips - stock.adobe.com.

Despite improved endometriosis guidelines, diagnostic delay is still present, according to a recent study published in BJOG.1

Diverse symptomatology and diagnostic challenges have presented challenges to the growth in endometriosis research over the last decade. This often leads to delays between symptom onset and diagnosis, which has been linked to worsened quality of life and higher health care costs.

Patients with endometriosis also face increased risks of mental health burdens.2 Data has indicated a 6% prevalence of anxiety in the general population vs a range of 10% to 87.5% among patients with endometriosis. Similarly, depression rates of 9.8% to 98.5% have been reported in endometriosis patients vs 6.6% to 9.3% in controls.

Data has indicated diagnostic delays may reach up to 7 to 10 years after symptom onset.1 Efforts to reduce these delays include guidelines from major organizations such as the American College of Obstetricians and Gynecologists. This may lead to a streamlined diagnostic process.

Investigators conducted a study to evaluate the current time to diagnosis. Relevant articles published between January 1, 2018, and May 16, 2023, were found through comprehensive searches of the MEDLINE and Embase databases.

Articles were included if they focused on the time to diagnosis in patients with endometriosis. Title and abstract screening were performed by 2 independent reviewers, after which full text screening occurred. Secondary publications, grey literature, and anecdotical evidence were excluded from the analysis.

Extracted data included diagnosis time, study design, study country overall sample size, population of interest, gender, diagnostic methods, time of data collection, and specialty of the diagnosing physician. Two independent reviewers performed bias assessment.

There were 3 definitions used to classify diagnosis time. These included the time between first symptom onset and diagnosis by a physician, the time between symptom onset and first related physician visit, and the time between first physician visit and endometriosis diagnosis.

Seventeen articles were included in the final analysis, all of which were observational studies with cross-sectional or retrospective cohort design. Of the studies, 4 were conducted in the United Kingdom, 4 in the United States, 3 in Australia, 1 in Germany, 1 in France, 1 in Italy, 1 in Canada, and 1 in New Zealand.

Diagnosis methods for endometriosis included surgical confirmation, histological confirmation, laparoscopy, clinical evaluation, imaging, and physician suspected. Most patients were White women aged at least 30 years presenting with multiple gynecologic symptoms.

Diagnosis times ranged from 0.3 to 12 years, with an overall range of 5 to 12 years. For the primary time to diagnosis and the clinical time to diagnosis, ranges were 1 to 4 years and 0.3 to 8.6 years, respectively.

In the 11 cross-sectional studies reporting a mean or median diagnosis time, the overall mean time to diagnosis ranged from 5.4 to 11.4 years. In comparison, the median time ranged from 5 to 12 years. For retrospective cohort studies, clinical diagnosis times were reported. This included a mean range of 2.1 to 3.7 years and a median range of 0.3 to 1.5 years.

Selection bias and reporting bias were commonly reported. Cross-sectional studies had a poor to fair range of quality, while retrospective cohort studies had a fair to good range of quality.

These results indicated significant diagnostic delay in patients with endometriosis. Investigators concluded factors leading to these delays must be understood to develop interventions that effectively reduce these diagnostic delays.

References

  1. De Corte P, Klinghardt M, Von Stockum S, Heinemann K. Time to diagnose endometriosis: Current status, challenges and regional characteristics—A systematic literature review. BJOG. 2024. doi:10.1111/1471-0528.17973
  2. Krewson C. Addressing mental health risks in endometriosis patients. Contemporary OB/GYN. December 10, 2024. Accessed January 5, 2025. https://www.contemporaryobgyn.net/view/addressing-mental-health-risks-in-endometriosis-patients
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