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Journal of Clinical Oncology, 2004 ASCO Annual Meeting Proceedings (Post-Meeting Edition).
Vol 22, No 14S (July 15 Supplement), 2004: 8230
© 2004 American Society of Clinical Oncology
Post breast therapy pain syndrome - A study of Internet-based patient and healthcare provider education
R. A. Wascher,
E. H. Rosenbaum,
A. Andrews,
F. Manuel,
M. Goldman,
R. M. Shapiro and
C. M. Dollbaum
John Wayne Cancer Institute, Santa Monica, CA; Stanford Hospitals & Clinics, Cancer Supportive Care National & International, Stanford, CA; University of California at San Francisco, San Francisco, CA; Union Memorial Hospital, Baltimore, MD
8230
Background:Post-breast Therapy Pain Syndrome (PBTPS) is a complex constellation of symptoms with multiple etiologic factors. In this era of breast-conserving therapy, the old term post-mastectomy syndrome is no longer sufficiently descriptive. PBTPS may also result from polyneuropathies caused by chemotherapy (including taxanes, vinca alkaloids, and platinum compounds) and radiation therapy. PBTPS frequently does not become clinically apparent until two to three months following cancer surgery, chemotherapy or radiation. Among patients who develop PBTPS, more than 50% experience significant discomfort that impairs their overall quality of life. The timely diagnosis and treatment of PBTPS requires that both physicians and patients have a clear understanding about this syndrome, and appropriate referrals to experienced pain management specialists be made. Methods:A pilot questionnaire was developed in September 2002 to evaluate the perceived utility of the Post Breast Therapy Pain Syndrome section. In March 2003 a PBTPS handout became available worldwide at CancerSupportiveCare.com. Our website serves on average 2500 pages per month about PBTPS to interested patients, and healthcare providers from over 80 countries, including the USA (the number of website hits is not included because the term hit can be misleading, e.g. 100 graphics + 1 web page = 101 hits). Results:Online Questionnaire September 2002 –November 2003
Of the 186 responses, 156 were from patient and support teams (84%) and 30 were from healthcare professionals (16%). Conclusions: Ease and speed of access to expert opinions, are valuable features of Internet-based forums. These are particularly useful in educating healthcare professionals, patients and support teams about symptoms, diagnostic modalities, and clinical management, in an effort to improve the quality of life of patients with PBTPS.
No significant financial relationships to disclose.
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