Lund Jennifer L, Meyer Anne-Marie, Deal Allison M, Choi Bong-Jin, Chang YunKyung, Williams Grant R, Pergolotti Mackenzi, Guerard Emily J, Muss Hyman B, Sanoff Hanna K
Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
Department of Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Oncologist. 2017 Aug;22(8):1002-1005. doi: 10.1634/theoncologist.2016-0418. Epub 2017 Apr 13.
Older adults (aged 65 years and older) diagnosed with cancer account for most cancer-related morbidity and mortality in the United States but are often underrepresented on clinical trials. Recent attention from a variety of professional, research, regulatory, and patient advocacy groups has centered on data linkage and data sharing as a means to capture patient information and outcomes outside of clinical trials to accelerate progress in the fight against cancer. The development of a more robust observational research data infrastructure would help to address gaps in the evidence base regarding optimal approaches to treating cancer among the growing and complex population of older adults. To demonstrate the feasibility of building such a resource, we linked information from a sample of older adults with cancer in North Carolina using three distinct, but complementary, data sources: (a) the Carolina Senior Registry, (b) the North Carolina Central Cancer Registry, and (c) North Carolina fee-for-service Medicare claims data. A description of the linkage process, metrics, and characteristics of the final cohort is reported. This study highlights the potential for data linkage to improve the characterization of health status among older adults with cancer and the possibility to conduct passive follow-up for outcomes of interest over time. Extensions of these linkage efforts in partnership with other institutions will enhance our ability to generate evidence that can inform the management of older adults with cancer.
在美国,被诊断患有癌症的老年人(65岁及以上)占大多数与癌症相关的发病率和死亡率,但在临床试验中的代表性往往不足。最近,各种专业、研究、监管和患者权益倡导团体都将注意力集中在数据链接和数据共享上,将其作为一种在临床试验之外获取患者信息和结果的手段,以加速抗癌进展。开发一个更强大的观察性研究数据基础设施将有助于解决在日益增长且复杂的老年人群体中,关于癌症最佳治疗方法的证据基础方面的差距。为了证明建立这样一种资源的可行性,我们使用三个不同但互补的数据源,将北卡罗来纳州患有癌症的老年人样本中的信息进行了链接:(a)卡罗来纳州老年登记处,(b)北卡罗来纳州中央癌症登记处,以及(c)北卡罗来纳州按服务收费的医疗保险索赔数据。报告了链接过程、指标以及最终队列的特征。这项研究强调了数据链接在改善癌症老年患者健康状况特征方面的潜力,以及随着时间推移对感兴趣的结果进行被动随访的可能性。与其他机构合作扩大这些链接工作,将增强我们生成证据的能力,这些证据可为癌症老年患者的管理提供参考。