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
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.