Collecting Long-Term Outcomes in Population-Based Cancer Registry Data: The Case of Breast Cancer Recurrence.

IF 3.2 Q2 ONCOLOGY JCO Global Oncology Pub Date : 2024-10-01 Epub Date: 2024-10-31 DOI:10.1200/GO-24-00249
Eileen Morgan, Colette O'Neill, Aude Bardot, Paul Walsh, Ryan R Woods, Lou Gonsalves, Sinéad Hawkins, Jan F Nygård, Serban Negoita, Esmeralda Ramirez-Pena, Karen Gelmon, Sabine Siesling, Fatima Cardoso, Julie Gralow, Isabelle Soerjomataram, Melina Arnold
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Abstract

Purpose: Cancer recurrence is an important long-term outcome of cancer survivors that is often not routinely collected and recorded by population-based registries. In this study, we review population-based studies to determine the current availability, landscape, and infrastructure of long-term outcomes, particularly metastatic recurrence, in women initially diagnosed with nonmetastatic breast cancer (MBC).

Methods: We reviewed the literature to identify studies that used population-based registry data to examine the distribution of metastatic recurrence in women diagnosed with non-MBC. Data on outcomes and methods of ascertainment were extracted. Registry infrastructure including sources and funding was also reviewed.

Results: A total of 23 studies from 11 registries in eight countries spanning Europe, North America, and Oceania were identified and included in the review. Most studies were retrospective in nature and collected recurrence data only for ad hoc studies rather than as part of their routine registration. Definition of recurrence and data sources varied considerably across studies: the cancer-free time interval between the start of follow-up and risk window ranged from the diagnosis of primary tumor (n = 7) to 6 months from diagnosis (n = 1); the start of follow-up differed between initial diagnosis (n = 16) and treatment (n = 7).

Conclusion: Cancer surveillance should encompass outcomes among survivors for research and monitoring. Studies are underway, but more are needed. Cancer registries should be supported to routinely collect recurrence data to allow complete evaluation of MBC as an outcome to be conducted and inform health care providers and researchers of the prognosis of both nonmetastatic and metastatic patients with breast cancer.

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在基于人群的癌症登记数据中收集长期结果:乳腺癌复发案例。
目的:癌症复发是癌症幸存者的一个重要长期结果,但基于人群的登记通常不会对其进行常规收集和记录。在本研究中,我们回顾了基于人群的研究,以确定最初诊断为非转移性乳腺癌(MBC)的女性长期结果(尤其是转移性复发)的可用性、现状和基础设施:方法:我们查阅了相关文献,以确定哪些研究使用了基于人群的登记数据来检查确诊为非转移性乳腺癌女性的转移性复发分布情况。我们提取了有关结果和确认方法的数据。此外,还对登记处的基础设施(包括来源和资金)进行了审查:共确定了来自欧洲、北美和大洋洲 8 个国家 11 个登记处的 23 项研究,并将其纳入审查范围。大多数研究都是回顾性的,只在特别研究中收集复发数据,而不是作为常规登记的一部分。不同研究对复发的定义和数据来源差异很大:随访开始时间与风险窗口之间的无癌症时间间隔从原发性肿瘤诊断(7 例)到诊断后 6 个月(1 例)不等;随访开始时间从最初诊断(16 例)到治疗(7 例)不等:结论:癌症监测应包括研究和监测幸存者的结果。研究正在进行中,但还需要更多的研究。应支持癌症登记处定期收集复发数据,以便对 MBC 这一结果进行全面评估,并让医疗服务提供者和研究人员了解非转移性和转移性乳腺癌患者的预后情况。
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来源期刊
JCO Global Oncology
JCO Global Oncology Medicine-Oncology
CiteScore
6.70
自引率
6.70%
发文量
310
审稿时长
7 weeks
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