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“对我来说重要的是”:一项针对肺癌治疗者、受影响者和肺癌生存者的国际在线调查。

'What matters to me': an international online survey of people treating, affected by and living with lung cancer.

机构信息

Primary Medical Care Group, Primary Care & Population Science Unit, University of Southampton School of Medicine, Aldermoor Health Centre, Southampton, SO16 5ST, UK.

出版信息

Future Oncol. 2012 Jul;8(7):883-96. doi: 10.2217/fon.12.65.

Abstract

AIM

Lung cancer is a common malignancy that occurs worldwide and generally has a poor prognosis. Its diagnosis presents significant physical and emotional challenges for patients and their family, friends and caregivers (FFCs). This study aimed to gain insights into patients' and FFCs' perspectives regarding lung cancer and its treatment, as well as physicians' perceptions of patients' thoughts about their illness.

PATIENTS & METHODS: An international online survey was conducted, assessing 113 patients diagnosed with non-small-cell lung cancer, 70 corresponding FFCs and 188 treating physicians. Data were collected using an interactive internet-based tool, in order to establish respondents' priorities.

RESULTS

Interesting differences between patients', FFCs' and physicians' perspectives on lung cancer were revealed. For all respondents, the primary feeling about lung cancer was described as "sadness". Patients were more likely to express a determination to be positive, whereas fear was a common response for FFCs and was a perspective also reported by physicians. Physicians' views on how they had communicated disease information were more positive than those of the patients, with many patients detecting physician hesitancy to communicate negative news.

CONCLUSION

This study provides important insights into the self-reported thoughts and feelings of patients with lung cancer, their personal networks of FFCs and the physicians who care for them.

摘要

目的

肺癌是一种常见的恶性肿瘤,在全球范围内普遍预后较差。其诊断给患者及其家属、朋友和照顾者(FFC)带来了巨大的身心挑战。本研究旨在深入了解患者和 FFC 对肺癌及其治疗的看法,以及医生对患者对疾病看法的看法。

患者和方法

进行了一项国际在线调查,评估了 113 名非小细胞肺癌患者、70 名相应的 FFC 和 188 名治疗医生。使用交互式互联网工具收集数据,以确定受访者的优先级。

结果

揭示了患者、FFC 和医生对肺癌看法之间的有趣差异。对于所有受访者,对肺癌的主要感觉是“悲伤”。患者更有可能表达积极的决心,而恐惧是 FFC 的常见反应,也是医生报告的观点。医生对他们如何传达疾病信息的看法比患者更积极,许多患者发现医生不愿传达负面消息。

结论

本研究深入了解了肺癌患者的自我报告的想法和感受、他们的 FFC 个人网络以及照顾他们的医生。

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