Journal of Clinical Oncology, 2005 ASCO Annual Meeting Proceedings.
Vol 23, No 16S (June 1 Supplement), 2005: 8185
© 2005 American Society of Clinical Oncology

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Abstract

Computer use with post breast therapy pain syndrome & lymphedema

Cancer Supportive Care National and Intl, San Francisco, CA; Univ of CA at San Francisco, San Francisco, CA; Univ of Hawaii, Honolulu, HI

8185

Background: In our information-centric society, the ability to use a personal computer is an essential capability in the professional and private lives of millions of people around the world. The problem of persistent swelling or pain in one or both arms after trauma of any kind may affect computer usage, especially for people who must work on the computer for prolonged periods of time. The functional impairment of using a computer comfortably with Post Breast Therapy Pain Syndrome (PBTPS) and Lymphedema has received little literature or research attention. Methods: Pilot questionnaires were developed in September 2002 to evaluate the perceived utility of the Living with Lymphedema and Post Breast Therapy Pain Syndrome (PBTPS) educational content at CancerSupportiveCare.com. From September 2002 to November 2004 our website served 158,600 pages of PBTPS and Lymphedema information to interested patients, support teams and medical professionals from 134 countries, including the USA (number of hits is not included because the term hit is misleading, e.g. 1000 graphics + 1 web page = 1001 hits). Results: Score 1–4 (n=1162 responses, 643 Lypmhedema and 519 PBTPS) Of the 1162 responses, 993 were from patients and support teams (85%) and 169 were from health care professionals (15%) Overall 97% of the respondents felt that the educational information was somewhat-to-very helpful Conclusions: An Internet-based approach to educating patients and health care professionals about rarely discussed and under-reported complications of cancer therapy resulted in a >97% favorable response from readers in 134 countries. This Internet-based approach to the understanding of computer use with Post Breast Therapy Pain Syndrome (PBTPS) and Lymphedema facilitates interactions between patients and specialists in a non-threatening anonymous forum, and encourages a strong culture of support and reciprocal interactions.

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