TY - JOUR
T1 - Assessing real-world representativeness of prospective registry cohorts in oncology
T2 - insights from patients with esophagogastric cancer
AU - Kuijper, Steven C.
AU - Besseling, Joost
AU - Klausch, Thomas
AU - Slingerland, Marije
AU - van der Zijden, Charlène J.
AU - Kouwenhoven, Ewout A.
AU - Beerepoot, Laurens V.
AU - Mohammad, Nadia Haj
AU - Klarenbeek, Bastiaan R.
AU - Verhoeven, Rob H. A.
AU - van Laarhoven, Hanneke W. M.
N1 - Publisher Copyright: © 2023 The Author(s)
PY - 2023/12/1
Y1 - 2023/12/1
N2 - 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.
AB - 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.
KW - Esophageal cancer
KW - Gastric cancer
KW - Health-related quality of life
KW - R-indicators
KW - Representativeness
KW - Survival
UR - http://www.scopus.com/inward/record.url?scp=85177031460&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.jclinepi.2023.10.009
DO - https://doi.org/10.1016/j.jclinepi.2023.10.009
M3 - Article
C2 - 37871837
SN - 0895-4356
VL - 164
SP - 65
EP - 75
JO - Journal of Clinical Epidemiology
JF - Journal of Clinical Epidemiology
ER -