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A survey of patient advocates within the National Cancer Institute's Prostate Cancer SPORE Program: who are they? what motivates them? what might they tell us?

作者信息

Kovtun Irina V, Engh James, Jatoi Aminah

机构信息

Division of Molecular Pharmacology and Experimental Therapeutics, Mayo Clinic, Rochester, MN, USA.

出版信息

J Cancer Educ. 2008;23(4):222-5. doi: 10.1080/08858190802188768.

DOI:10.1080/08858190802188768
PMID:19058069
Abstract

BACKGROUND

Interacting with patients, researchers, and administrators, patient advocates have a unique vantage point. Yet, few prior studies have sought to understand these individuals or to seek their opinions on cancer issues.

METHODS

A survey to address the foregoing was developed and mailed to advocates within the National Cancer Institute's Prostate Cancer SPORE Program.

RESULTS

A total of 10 of 19 advocates responded. All were men, most were retired, and all had faced a diagnosis of prostate cancer. Two major themes emerged: (1) the importance of patient education in promoting informed clinical decision-making and (2) a perceived need for patient-centered research by providers and educators.

CONCLUSIONS

Prostate cancer patient advocates provide a broad range of opinions on the spectrum of cancer care. Similar studies among advocates involved in other malignancies may be worthwhile.

摘要

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Early versus delayed endocrine therapy for prostate cancer.前列腺癌的早期与延迟内分泌治疗
Endocr Relat Cancer. 2007 Mar;14(1):1-11. doi: 10.1677/ERC-06-0022.
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A piece of my mind. Winners and losers.肺腑之言。赢家与输家。
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从患者到倡导者:踏上癌症生存并走向赋权的旅程。
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J Natl Cancer Inst. 1998 Aug 19;90(16):1193-5. doi: 10.1093/jnci/90.16.1193a.
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Papers that go beyond numbers (qualitative research).超越数字的论文(定性研究)。
BMJ. 1997 Sep 20;315(7110):740-3. doi: 10.1136/bmj.315.7110.740.