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

Abstract 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 out...

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Main Authors: Eugenio Ventimiglia, Mieke Van Hemelrijck, Lars Lindhagen, Pär Stattin, Hans Garmo
Format: Article
Language:English
Published: BMC 2019-05-01
Series:BMC Medical Informatics and Decision Making
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12911-019-0823-y
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author Eugenio Ventimiglia
Mieke Van Hemelrijck
Lars Lindhagen
Pär Stattin
Hans Garmo
author_facet Eugenio Ventimiglia
Mieke Van Hemelrijck
Lars Lindhagen
Pär Stattin
Hans Garmo
author_sort Eugenio Ventimiglia
collection DOAJ
description Abstract 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 (PCBaSeTraject), 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 (PCBaSeSim). 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 PCBaSeTraject. Results PCBaSeSim estimates for the cumulative incidence of first and second transitions, death from PCa and death from other causes were compared to observed transitions in PCBaSeTraject. A good agreement was found between simulated and observed estimates. Conclusions We developed a reliable and accurate simulation tool, PCBaSeSim that provides information on disease trajectories for subjects with a chronic disease on an individual and population-based level.
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spelling doaj.art-9fd2ad04eda145a6af681ed82441763e2022-12-22T00:58:49ZengBMCBMC Medical Informatics and Decision Making1472-69472019-05-011911910.1186/s12911-019-0823-yHow to measure temporal changes in care pathways for chronic diseases using health care registry dataEugenio Ventimiglia0Mieke Van Hemelrijck1Lars Lindhagen2Pär Stattin3Hans Garmo4Division of Experimental Oncology/Unit of Urology, IRCCS Ospedale San RaffaeleKing’s College London, School of Cancer and Pharmaceutical Sciences, Translational Oncology & Urology Research (Tour)Uppsala Clinical Research CenterDepartment of Surgical Sciences, Uppsala UniversityKing’s College London, School of Cancer and Pharmaceutical Sciences, Translational Oncology & Urology Research (Tour)Abstract 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 (PCBaSeTraject), 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 (PCBaSeSim). 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 PCBaSeTraject. Results PCBaSeSim estimates for the cumulative incidence of first and second transitions, death from PCa and death from other causes were compared to observed transitions in PCBaSeTraject. A good agreement was found between simulated and observed estimates. Conclusions We developed a reliable and accurate simulation tool, PCBaSeSim that provides information on disease trajectories for subjects with a chronic disease on an individual and population-based level.http://link.springer.com/article/10.1186/s12911-019-0823-yAgeingChronic diseaseProstate cancerState transition
spellingShingle Eugenio Ventimiglia
Mieke Van Hemelrijck
Lars Lindhagen
Pär Stattin
Hans Garmo
How to measure temporal changes in care pathways for chronic diseases using health care registry data
BMC Medical Informatics and Decision Making
Ageing
Chronic disease
Prostate cancer
State transition
title How to measure temporal changes in care pathways for chronic diseases using health care registry data
title_full How to measure temporal changes in care pathways for chronic diseases using health care registry data
title_fullStr How to measure temporal changes in care pathways for chronic diseases using health care registry data
title_full_unstemmed How to measure temporal changes in care pathways for chronic diseases using health care registry data
title_short How to measure temporal changes in care pathways for chronic diseases using health care registry data
title_sort how to measure temporal changes in care pathways for chronic diseases using health care registry data
topic Ageing
Chronic disease
Prostate cancer
State transition
url http://link.springer.com/article/10.1186/s12911-019-0823-y
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