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Integration of Cancer Registry and Electronic Health Record Data to Construct a Childhood Cancer Survivorship Cohort, Facilitate Risk Stratification, and Assess Appropriate Follow-up Care
  • +4
  • David Noyd,
  • Nigel Neely,
  • kristin Schroeder,
  • Paul Lantos,
  • Steve Power,
  • Susan Kreissman,
  • Kevin Oeffinger
David Noyd
Duke University Medical Center
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Nigel Neely
Duke Cancer Institute
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kristin Schroeder
Duke University Hospital
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Paul Lantos
Duke University Medical Center
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Steve Power
Duke Cancer Institute
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Susan Kreissman
Duke University Hospital
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Kevin Oeffinger
Duke Cancer Institute
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Abstract

Background: This retrospective study harnessed an institutional cancer registry to construct a childhood cancer survivorship cohort, integrate electronic health record (EHR) and geospatial data to risk stratify patients for serious adverse health outcomes, analyze follow-up care patterns, and determine factors associated with suboptimal follow-up care. Procedure: The survivorship cohort included patients ≤18 years of age with a diagnosis of a malignancy reported to the institutional cancer registry between January 1, 1994 and November 30, 2012. ICD-O-3 coding and treatment exposures facilitated risk stratification of survivors. All follow-up visits were extracted from the EHR through linkage to the cancer registry based on medical record number (MRN). Results: Eight-hundred-and-sixty-five survivors were included in the final analytic cohort, of whom 191, 496, and 158 were considered low, intermediate, and high risk survivors, respectively. Two-hundred-and-eight-two survivors (32.6%) were not seen in any oncology-related subspecialty clinic at Duke five to seven years after initial diagnosis. Factors associated with a clinic visit included younger age (p=0.008), acute lymphoblastic leukemia (ALL) as the primary diagnosis (p<0.001), race/ethnicity (p=0.010), risk strata (p=0.001), distance to treatment center (p<0.0001), and lower ADI (p=0.011). Multivariable logistic modeling with adjustment for diagnosis of ALL, gender, age at diagnosis, and race/ethnicity attenuated the association between follow-up care and risk strata (p=0.17) Conclusions: Nearly a third of survivors received suboptimal follow-up care. This study provides a reproducible model to integrate cancer registry and EHR data to construct risk-stratified survivorship cohorts to assess follow-up care.

Peer review status:ACCEPTED

28 Oct 2020Submission Checks Completed
28 Oct 2020Assigned to Editor
28 Oct 2020Submitted to Pediatric Blood & Cancer
30 Oct 2020Reviewer(s) Assigned
20 Nov 2020Review(s) Completed, Editorial Evaluation Pending
20 Nov 2020Editorial Decision: Revise Major
12 Feb 20211st Revision Received
12 Feb 2021Submission Checks Completed
12 Feb 2021Assigned to Editor
13 Feb 2021Reviewer(s) Assigned
27 Feb 2021Review(s) Completed, Editorial Evaluation Pending
28 Feb 2021Editorial Decision: Accept