Department of Pediatrics, Division of Pediatric Hematology-Oncology, Duke University Medical Center, Durham, North Carolina, USA.
Duke Cancer Institute, Durham, North Carolina, USA.
Pediatr Blood Cancer. 2021 Jun;68(6):e29014. doi: 10.1002/pbc.29014. Epub 2021 Mar 19.
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.
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.
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 < .001), race/ethnicity (p = .010), late-effect risk strata (p = .001), distance to treatment center (p < .0001), and area deprivation index (ADI) (p = .011). Multivariable logistic modeling attenuated the association for high-risk (OR 1.72; 95% CI 0.805, 3.66) and intermediate-risk (OR 1.23, 95% CI 0.644, 2.36) survivors compared to survivors at low risk of late effects among the PHO cohort. PNO survivors at high risk for late effects were more likely to follow up (adjusted OR 3.66; 95% CI 1.76, 7.61).
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.
本回顾性研究利用机构癌症登记处构建了一个儿童癌症生存者队列，整合电子健康记录（EHR）和地理空间数据，根据晚期效应风险对生存者进行分层，分析随访护理模式，并确定与随访护理不理想相关的因素。
生存者队列包括 1994 年 1 月 1 日至 2012 年 11 月 30 日向机构癌症登记处报告的≤18 岁的患者。国际肿瘤疾病分类学，第三版（ICD-O-3）编码和治疗暴露有助于对生存者进行风险分层。根据病历号（MRN）将 EHR 与癌症登记处链接，以提取就诊记录。
最终分析队列纳入了 59 名儿科血液肿瘤学（PHO）和 275 名儿科神经肿瘤学（PNO）生存者。282 名生存者（32.6%）在初始诊断后 5-7 年内未在任何肿瘤相关专科诊所就诊。与随访相关的因素包括年龄（p=0.008）、诊断（p<0.001）、种族/民族（p=0.010）、晚期效应风险分层（p=0.001）、与治疗中心的距离（p<0.0001）和区域贫困指数（ADI）（p=0.011）。多变量逻辑建模减弱了高危（OR 1.72；95% CI 0.805，3.66）和中危（OR 1.23，95% CI 0.644，2.36）与低危（PHO 队列中晚期效应风险较低）生存者相比，幸存者的关联。有晚期效应高风险的 PNO 幸存者更有可能接受随访（调整后的 OR 3.66；95% CI 1.76，7.61）。
近三分之一的生存者接受了不理想的随访护理。本研究提供了一种可复制的模型，可将癌症登记处和 EHR 数据整合到一起，构建风险分层的生存者队列，以评估随访护理。
