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?

Research output: Contribution to journalArticle

2 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)222-225
Number of pages4
JournalJournal of Cancer Education
Volume23
Issue number4
DOIs
StatePublished - Oct 2008

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National Cancer Institute (U.S.)
Prostatic Neoplasms
Neoplasms
Patient Education
Administrative Personnel
Research Personnel
Surveys and Questionnaires
Research

ASJC Scopus subject areas

  • Oncology
  • Public Health, Environmental and Occupational Health

Cite this

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title = "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?",
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.",
author = "Kovtun, {Irina V} and James Engh and Aminah Jatoi",
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AU - Engh, James

AU - Jatoi, Aminah

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AB - 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.

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