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Administrative health data sets to study endometriosis: a population-based approach

Published:August 24, 2021DOI:https://doi.org/10.1016/j.ajog.2021.08.023
      We thank Drs Parra and Feres for their Letter to the Editors regarding our original article in the American Journal of Obstetrics & Gynecology. They expressed concern that our population-based study examining the surgical management of endometriosis in Ontario, Canada, did not include the classification of the disease. Population-based studies using administrative health data sets have several advantages, including a large sample size, a lower risk of selection bias (given that they provide data on individuals that would normally not participate in prospective cohorts or respond to surveys), the possibility to cover temporal trends, and their cost-effectiveness. However, this study design comes with its limitations. In our study, we used data sets that do not include the staging of endometriosis. Because of this limitation, we relied on surgical intervention to predict disease stage, assuming that individuals with more advanced endometriosis would undergo more extensive surgical intervention. We agree that accurate categorization and disease staging is necessary to tailor management for each individual patient. We propose that the integration of accurate disease staging in longitudinal population-based cohorts should be prioritized to improve care for endometriosis patients. This is the intent of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project.
      • Becker C.M.
      • Laufer M.R.
      • Stratton P.
      • et al.
      World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research.
      Although this collaboration is continually expanding to include more centers, it is yet to be globally adopted. Ideally, patients with deep endometriosis would receive an accurate diagnosis preoperatively through diagnostic imaging
      • Guerriero S.
      • Condous G.
      • van den Bosch T.
      • et al.
      Systematic approach to sonographic evaluation of the pelvis in women with suspected endometriosis, including terms, definitions and measurements: a consensus opinion from the International Deep Endometriosis Analysis (IDEA) group.
      and consequently be counseled about their potential surgical outcomes.
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      References

        • Becker C.M.
        • Laufer M.R.
        • Stratton P.
        • et al.
        World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project: I. Surgical phenotype data collection in endometriosis research.
        Fertil Steril. 2014; 102: 1213-1222
        • Guerriero S.
        • Condous G.
        • van den Bosch T.
        • et al.
        Systematic approach to sonographic evaluation of the pelvis in women with suspected endometriosis, including terms, definitions and measurements: a consensus opinion from the International Deep Endometriosis Analysis (IDEA) group.
        Ultrasound Obstet Gynecol. 2016; 48: 318-332
        • Bougie O.
        • Mcclintock C.
        • Pudwell J.
        • Brogly S.B.
        • Velez M.P.
        Short-term outcomes of endometriosis surgery in Ontario: a population-based cohort study.
        Acta Obstet Gynecol Scand. 2021; 100: 1140-1147

      Linked Article

      • Long-term follow-up after endometriosis surgery: what about deep endometriosis?
        American Journal of Obstetrics & GynecologyVol. 226Issue 1
        • Preview
          Bougie et al1 have recently published an article regarding a population-based cohort study of patients who underwent surgical management for endometriosis in Ontario. The surgical interventions were classified as diagnostic laparoscopy, minor conservative surgery, major conservative surgery, and hysterectomy. One of the conclusions of the study was that 1 in 5 patients who underwent major conservative surgery required additional surgeries for endometriosis. Despite the relevance of the information provided in the study, some important issues need to be discussed.
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