Men who visited a major online support group after being diagnosed with prostate cancer were most likely to seek advice on therapy and treatment, together with emotional support, according to research in the May issue of the urology journal BJUI. But, surprisingly, they went to great lengths to avoid using the word "cancer".
Researchers studied 501 threads posted during a 32-month period on Germany's largest prostate cancer forum, run by an umbrella group of organisations covering the disease. They analysed 1,630 posts on 82 threads started by men who had just been diagnosed and needed help to make decisions. Off-topic threads and posts written by people seeking advice on behalf of others were excluded.
"Social support plays a major role for most patients with prostate cancer, because of the intimate nature of the disease and the fact that there are such a wide range of treatment choices available for men with localised disease" explains lead author Dr Johannes Huber from the University of Heidelberg, Germany.
"Online support groups enable us to understand how patients communicate with each other when it comes to making medical decisions and this knowledge increases our understanding of our patients' needs and concerns."
Key findings of the study included:
"One thing that did surprise us about the forum was the tentative language used by the posters and the fact that they went to great lengths to avoid using the word cancer" says Dr Huber. "It was almost as if the word was taboo. We were also surprised that they avoided using other common language, preferring medical phrases like 'prostate carcinoma' and 'positive biopsy findings', which were extraordinarily common."
The authors feel that virtual peer-to-peer interaction could provide similar positive benefits to those offered by conventional support groups.
"Without the necessity of direct personal contact, patients readily receive information, advice and emotional support" says Dr Huber. "Emotional issues are covered whether or not they are requested and the contact is much wider than focusing on facts and figures.
"In short, social interaction on the internet is successful and appears to be a regular part of coping with prostate cancer as well as the decision-making process. And monitoring this interaction is a good way for clinicians to develop a greater understand of their patients' needs and worries."
The article is free online at: http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2010.09859.x/pdf
Notes to editors
Decision-making in localized prostate cancer: lessons learned from an online support group. Huber et al. BJUI. 107,pp1570-1575. (May 2011). DOI: 10.1111/j.1464-410X.2010.09859.x
Established in 1929, BJUI is edited by Professor John Fitzpatrick from Mater Misericordiae University Hospital and University College Dublin, Ireland. It provides its international readership with invaluable practical information on all aspects of urology, including original and investigative articles and illustrated surgery. http://wileyonlinelibrary.com/journal/BJU
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