Purpose

There is limited research linking data sources to evaluate the multifactorial impacts on the quality of treatment received and financial burden among young women with breast cancer. To address this gap and support future evaluation efforts, we examined the utility of combining patient survey and cancer registry data.

Patient and Methods

We administered a survey to women, aged 18–39 years, with breast cancer from four U.S. states. We conducted a systematic response-rate analysis and evaluated differences between racial groups. Survey responses were linked with cancer registry data to assess whether surveys could reliably supplement registry data.

Results

A total of 830 women completed the survey for a response rate of 28.4 %. Blacks and Asian/Pacific Islanders were half as likely to respond as white women. Concordance between survey and registry data was high for demographic variables (Cohen’s kappa [k]: 0.879 to 0.949), moderate to high for treatments received (k: 0.467 to 0.854), and low for hormone receptor status (k: 0.167 to 0.553). Survey items related to insurance status, employment, and symptoms revealed racial differences.

Conclusion

Cancer registry data, supplemented by patient surveys, can provide a broader understanding of the quality of care and financial impacts of breast cancer among young women.

中文翻译：

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将调查和登记数据联系起来以评估干预措施和政策以解决年轻女性乳腺癌生存率差异的效用

目的

将数据源联系起来以评估对年轻乳腺癌女性接受的治疗质量和经济负担的多因素影响的研究有限。为了弥补这一差距并支持未来的评估工作，我们研究了结合患者调查和癌症登记数据的效用。

患者和方法

我们对来自美国四个州的 18-39 岁乳腺癌女性进行了一项调查。我们进行了系统的响应率分析并评估了种族群体之间的差异。调查回复与癌症登记数据相关联，以评估调查是否可以可靠地补充登记数据。

结果

共有 830 名妇女完成了调查，答复率为 28.4%。黑人和亚洲/太平洋岛民做出回应的可能性是白人女性的一半。人口统计学变量（Cohen's kappa [k]：0.879 至 0.949）的调查和登记数据之间的一致性较高，接受的治疗的一致性为中至高（k：0.467 至 0.854），激素受体状态的一致性较低（k：0.167 至 0.553） . 与保险状况、就业和症状相关的调查项目揭示了种族差异。

结论

癌症登记数据，辅以患者调查，可以更广泛地了解年轻女性乳腺癌的护理质量和财务影响。