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*
  • *Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)
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Abstract

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
Volume164
DOIs
Publication statusPublished - Dec 2023

Bibliographical note

Publisher Copyright:
© 2023 The Author(s)

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