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Background  Disease trajectories for chronic diseases can span over several decades, with several time-dependent factors affecting treatment decisions. Thus, there is a need for long-term predictions of disease trajectories to inform patients and healthcare professionals on the long-term outcomes and provide information on the need of future health care. Here, we propose a state transition model to describe and predict disease trajectories up to 25 years after diagnosis in men with prostate cancer (PCa), as a proof of principle.    Methods  States, state transitions, and transition probabilities were identified and estimated in Prostate Cancer data Base of Sweden (PCBaSe Traject ), using nationwide population-based data from 118,743 men diagnosed with PCa. A state transition model in discrete time steps (i.e., 4 weeks) was developed and applied to capture all possible transitions (PCBaSe Sim ). Transition probabilities were estimated for changes in both treatment and comorbidity. These models combined yielded parameter estimates to run an individual-level simulation based on the state-transition model to obtain prediction estimates. Predicted estimates were then compared to real world data in PCBaSe Traject .    Results  PCBaSe Sim  estimates for the cumulative incidence of first and second transitions, death from PCa and death from other causes were compared to observed transitions in PCBaSe Traject . A good agreement was found between simulated and observed estimates.    Conclusions  We developed a reliable and accurate simulation tool, PCBaSe Sim  that provides information on disease trajectories for subjects with a chronic disease on an individual and population-based level.    Electronic supplementary material  The online version of this article (10.1186/s12911-019-0823-y) contains supplementary material, which is available to authorized users.

How to measure temporal changes in care pathways for chronic diseases using health care registry data