title: Temporal representation of care trajectories of cancer patients using data from a regional information system: an application in breast cancer.
abstract: BACKGROUND
  Ensuring that all cancer patients have access to the appropriate treatment within an appropriate time is a strategic priority in many countries. There is in particular a need to describe and analyse cancer care trajectories and to produce waiting time indicators. We developed an algorithm for extracting temporally represented care trajectories from coded information collected routinely by the general cancer Registry in Poitou-Charentes region, France. The present work aimed to assess the performance of this algorithm on real-life patient data in the setting of non-metastatic breast cancer, using measures of similarity.
  
  
  METHODS
  Care trajectories were modeled as ordered dated events aggregated into states, the granularity of which was defined from standard care guidelines. The algorithm generates each state from the aggregation over a period of tracer events characterised on the basis of diagnoses and medical procedures. The sequences are presented in simple form showing presence and order of the states, and in an extended form that integrates the duration of the states. The similarity of the sequences, which are represented in the form of chains of characters, was calculated using a generalised Levenshtein distance.
  
  
  RESULTS
  The evaluation was performed on a sample of 159 female patients whose itineraries were also calculated manually from medical records using the same aggregation rules and dating system as the algorithm. Ninety-eight per cent of the trajectories were correctly reconstructed with respect to the ordering of states. When the duration of states was taken into account, 94% of the trajectories matched reality within three days. Dissimilarities between sequences were mainly due to the absence of certain pathology reports and to coding anomalies in hospitalisation data.
  
  
  CONCLUSIONS
  These results show the ability of an integrated regional information system to formalise care trajectories and automatically produce indicators for time-lapse to care instatement, of interest in the planning of care in cancer. The next step will consist in evaluating this approach and extending it to more complex trajectories (metastasis, relapse) and to other cancer localisations.
authors.affiliation: Unité d'épidémiologie, biostatistique et registre général des cancers de Poitou-Charentes, Faculté de médecine, Centre Hospitalier Universitaire de Poitiers, Université de Poitiers, 6, rue de la milétrie, Poitiers, Cedex BP 199 86034, France. gautier.defossez@univ-poitiers.fr.
authors.forename: Gautier
authors.initials: G
authors.lastname: Defossez
authors.forename: Alexandre
authors.initials: A
authors.lastname: Rollet
authors.forename: Olivier
authors.initials: O
authors.lastname: Dameron
authors.forename: Pierre
authors.initials: P
authors.lastname: Ingrand
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000465:Algorithms; D001943:Breast Neoplasms / Q000453:epidemiology / Q000628:therapy*; D057286:Electronic Health Records; D005260:Female; D005602:France; D063005:Health Information Systems / Q000592:standards*; D006801:Humans; D008875:Middle Aged; D016032:Randomized Controlled Trials as Topic / Q000592:standards*; D012042:Registries; D013997:Time Factors