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

• Published in: Journal of clinical epidemiology 2023-12, Vol.164, p.65-75
• Main Authors: Kuijper, Steven C., Besseling, Joost, Klausch, Thomas, Slingerland, Marije, van der Zijden, Charlène J., Kouwenhoven, Ewout A., Beerepoot, Laurens V., Mohammad, Nadia Haj, Klarenbeek, Bastiaan R., Verhoeven, Rob H.A., van Laarhoven, Hanneke W.M.
• Format: Article
• Language: English
• Subjects: Calibration; Cancer; Cancer therapies; Cohort analysis; Colorectal cancer; Confidence intervals; Drug dosages; Esophageal cancer; Esophageal Neoplasms - epidemiology; Esophageal Neoplasms - therapy; Esophagogastric cancer; Esophagus; Gastric cancer; Health-related quality of life; Humans; Indicators; Netherlands - epidemiology; Observational studies; Oncology; Patients; Population studies; Quality of life; Questionnaires; R-indicators; Registries; Representativeness; Stomach Neoplasms - epidemiology; Stomach Neoplasms - therapy; Subgroups; Survival; Survival analysis; Variables; Weighting
• ISSN: 0895-4356; 1878-5921
• DOI: 10.1016/j.jclinepi.2023.10.009

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. 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. The R-indicator of the entire POCOP registry was 0.72 95%CI[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. 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.