Can non-participants in a follow-up be used to draw conclusions about incidences and prevalences in the full population invited at baseline? An investigation based on the Swedish MDC cohort

BACKGROUND: Participants in epidemiological cohorts may not be representative of the full invited population, limiting the generalizability of prevalence and incidence estimates. We propose that this problem can be remedied by exploiting data on baseline participants who refused to participate in a re-examination, as such participants may be more similar to baseline non-participants than what baseline participants who agree to participate in the re-examination are. METHODS: We compared background characteristics, mortality, and disease incidences across the full population invited to the Malmö Diet and Cancer (MDC) study, the baseline participants, the baseline non-participants, the baseline participants who participated in a re-examination, and the baseline participants who did not participate in the re-examination. We then considered two models for estimating characteristics and outcomes in the full population: one (“the substitution model”) assuming that the baseline non-participants were similar to the baseline participants who refused to participate in the re-examination, and one (“the extrapolation model”) assuming that differences between the full group of baseline participants and the baseline participants who participated in the re-examination could be extended to infer results in the full population. Finally, we compared prevalences of baseline risk factors including smoking, risky drinking, overweight, and obesity across baseline participants, baseline participants who participated in the re-examination, and baseline participants who did not participate in the re-examination, and used the above models to estimate the prevalences of these factors in the full invited population. RESULTS: Compared to baseline non-participants, baseline participants were less likely to be immigrants, had higher socioeconomic status, and lower mortality and disease incidences. Baseline participants not participating in the re-examination generally resembled the full population. The extrapolation model often generated characteristics and incidences even more similar to the full population. The prevalences of risk factors, particularly smoking, were estimated to be substantially higher in the full population than among the baseline participants. CONCLUSIONS: Participants in epidemiological cohorts such as the MDC study are unlikely to be representative of the full invited population. Exploiting data on baseline participants who did not participate in a re-examination can be a simple and useful way to improve the generalizability of prevalence and incidence estimates. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12874-023-02053-w.