Assessing real-world representativeness of prospective registry cohorts in oncology: insights from patients with esophagogastric cancer

Steven C. Kuijper, Joost Besseling, Thomas Klausch, Marije Slingerland, Charlène J. van der Zijden, Ewout A. Kouwenhoven, Laurens V. Beerepoot, Nadia Haj Mohammad, Bastiaan R. Klarenbeek, Rob H. A. Verhoeven, Hanneke W. M. van Laarhoven

Research output: Contribution to journalArticleAcademicpeer-review


Objectives: This study aimed to explore the real-world representativeness of a prospective registry cohort with active accrual in oncology, applying a representativeness metric that is novel to health care. Study Design and Setting: We used data from the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP) registry and from the population-based Netherlands Cancer Registry (NCR). We used Representativeness-indicators (R-indicators) and overall survival to investigate the degree to which the POCOP cohort and clinically relevant subgroups were a representative sample compared to the NCR database. Calibration using inverse propensity score weighting was applied to correct differences between POCOP and NCR. Results: The R-indicator of the entire POCOP registry was 0.72 95% confidence interval [0.71, 0.73]. Representativeness of palliative patients was higher than that of potentially curable patients (R-indicator 0.88 [0.85, 0.90] and 0.70 [0.68, 0.71], respectively). Stratification to clinically relevant subgroups based on treatment resulted in higher R-indicators of the respective subgroups. Both after stratification and calibration weighting survival estimates in the POCOP registry were more similar to that in the NCR population. Conclusion: This study demonstrated the assessment of real-world representativeness of patients who participated in a prospective registry cohort and showed that real-world representativeness improved when the variability in treatment was accounted for.
Original languageEnglish
Pages (from-to)65-75
Number of pages11
JournalJournal of Clinical Epidemiology
Publication statusPublished - 1 Dec 2023


  • Esophageal cancer
  • Gastric cancer
  • Health-related quality of life
  • R-indicators
  • Representativeness
  • Survival

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