Integration of cancer registry and electronic health record data to construct a childhood cancer survivorship cohort, facilitate risk stratification for late effects, and assess appropriate follow‐up care

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 stratify survivors based on late‐effect risk, analyze follow‐up care patterns, and determine factors ass...

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Bibliographic Details
Published in:Pediatric blood & cancer 2021-06, Vol.68 (6), p.e29014-n/a
Main Authors: Noyd, David H., Neely, Nigel B., Schroeder, Kristin M., Lantos, Paul M., Power, Steve, Kreissman, Susan G., Oeffinger, Kevin C.
Format: Article
Language:English
Subjects:
Aftercare - methods
Aftercare - statistics & numerical data
biomedical informatics
Cancer
Cancer Survivors - statistics & numerical data
Child
Child, Preschool
Childhood
childhood cancer survivorship
Children
Databases, Factual - statistics & numerical data
Diagnosis
Electronic Health Records
Electronic medical records
Female
Hematology
Humans
Logistic Models
Male
Neoplasms - classification
Neoplasms - therapy
Neural coding
Oncology
Pediatrics
Registries
Retrospective Studies
Risk
Survival
Survivorship
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Summary: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 stratify survivors based on late‐effect risk, analyze follow‐up care patterns, and determine factors associated with suboptimal follow‐up care. Procedure The survivorship cohort included patients ≤18 years of age reported to the institutional cancer registry between January 1, 1994 and November 30, 2012. International Classification of Diseases for Oncology, third revision (ICD‐O‐3) coding and treatment exposures facilitated risk stratification of survivors. The EHR was linked to the cancer registry based on medical record number (MRN) to extract clinic visits. Results Five hundred and ninety pediatric hematology‐oncology (PHO) and 275 pediatric neuro‐oncology (PNO) survivors were included in the final analytic cohort. Two hundred and eight‐two survivors (32.6%) were not seen in any oncology‐related subspecialty clinic at Duke 5–7 years after initial diagnosis. Factors associated with follow‐up included age (p = .008), diagnosis (p 
ISSN:1545-5009
1545-5017
DOI:10.1002/pbc.29014