title: The quest for population-level cancer recurrence data; current deficiencies and targets for improvement.
abstract: BACKGROUND
  Cancer recurrence is a critical outcome in cancer care. However, population-level recurrence information is currently unavailable. Tumor registries provide an opportunity to generate this information, but require major reform. Our objectives were to (1) determine causes for variability in collection of recurrence, and (2) identify targets for intervention.
  
  
  METHODS
  On-site interviews and observations of tumor registry follow-up procedures were conducted at Commission on Cancer (CoC) accredited hospitals. Information regarding registry resources (caseload, staffing, chart availability), follow-up methods and perceived causes for difficulty in obtaining recurrence information was obtained.
  
  
  RESULTS
  Seven NCI/academic, 5 comprehensive community and 2 community centers agreed to participate. Hospitals were inconsistent in their investigation of cancer recurrence, resulting in underreporting of rates of recurrence. Hospital characteristics, registry staffing, staff qualifications and medical chart access influenced follow-up practices. Coding standards and definitions for recurrence were suboptimal, resulting in hospital variability of recurrence reporting. Finally, inability to identify cases lost to follow-up in collected data prevents accurate analysis of recurrence rates.
  
  
  CONCLUSIONS
  Tumor registries collect varying degrees of recurrence information and provide the underpinnings to capture population-level cancer recurrence data. Targets for intervention are listed, and provide a roadmap to obtain this critical information in cancer care.
authors.affiliation: Department of Surgery, University of Chicago, Chicago, Illinois; Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, Illinois.
authors.forename: Haejin
authors.initials: H
authors.lastname: In
authors.forename: Cassie A
authors.initials: CA
authors.lastname: Simon
authors.forename: Jerri Linn
authors.initials: JL
authors.lastname: Phillips
authors.forename: Mitchell C
authors.initials: MC
authors.lastname: Posner
authors.forename: Clifford Y
authors.initials: CY
authors.lastname: Ko
authors.forename: David P
authors.initials: DP
authors.lastname: Winchester
mesh_terms: D059019:Clinical Coding; D003625:Data Collection / Q000592:standards*; D006761:Hospitals; D006801:Humans; D038801:International Classification of Diseases; D059012:Lost to Follow-Up; D008499:Medical Records; D009364:Neoplasm Recurrence, Local / Q000453:epidemiology*; D010564:Personnel, Hospital; D011786:Quality Control; D058996:Quality Improvement; D012042:Registries / Q000592:standards*; D014481:United States / Q000453:epidemiology
keywords: cancer database; cancer epidemiology; cancer recurrence; cancer registrars; tumor registries