Urology: Online Support May Be as Good as In-Person Support for Prostate Cancer Patients

Study of online groups could provide an additional path to understanding patients

Men who visited an online support group after being diagnosed with localized prostate cancer were most often seeking treatment advice, according to the results of a study published recently in BJU International. Other common requests were for emotional support and information regarding a particular course of treatment. The word “cancer,” however, was rarely used.

Social support is important in a condition like localized prostate cancer because men have many curative treatment options and this raises quality-of-life questions that urologists and other healthcare professionals can only partly answer. Although conventional support groups have been studied, little analysis of the content of online peer-to-peer support groups exists. Therefore, the authors undertook the current study. They combined quantitative and qualitative methods to analyze the form, content, and language used between patients with localized prostate cancer in an online support group.

The researchers reviewed 1,630 posts from 82 threads started between May 2006 and December 2008 by men who had recently been diagnosed with prostate cancer and needed help making decisions. Off-topic threads and posts on behalf of someone other than the poster were excluded. Sixty-six percent of the threads were requests for therapy recommendations, 46 percent were requests for information about the course of treatment, and 46 percent were requests for emotional support. In addition, emotional support was often provided even if it was not sought. Therefore, authors write that online support groups might have therapeutic importance in terms of coping.

The authors noted that a small number of users had a disproportionate effect on opinions. Only five percent of users accounted for 70 percent of the postings, which resulted in a high frequency of recommendations for a second opinion on biopsy cores and a trend toward additional imaging that was not medically necessary. The authors state that “these potentially negative effects of medical advice” are similar to those witnessed in conventional support groups. Treatment recommendations, however, seem to be more balanced. The authors also discovered a well-founded process of decision-making triggered by social interaction where balancing reason is actively demanded. Therefore, online support groups are a very strong tool for involving patients with cancer in their own care. Use of the word “cancer,” was less frequent than the authors expected.

The authors write that online support groups could offer benefits similar to those of conventional support groups. “Scientific evaluation of peer-to-peer counseling is a complementary way for clinicians to get to know their patients’ needs and worries. Moreover, the possible negative effects of support groups can be discussed during patient-physician contact,” they conclude.

Source: Huber J, Ihrig A, Peters T, et al. 2011. Decision-making in localized prostate cancer: lessons learned from an online support group. BJU International 107:1570-1575.