Today, disease specific online discussion boards are an important (Neuhauser & Kreps 2008
) but still underestimated source of information and emotional support for patients and their relatives or friends. Because they offer a unique possibility for analyzing a patient-to-patient or peer-to-peer communication they have also become the subject of scientific interest (Eysenbach et al. 2004
). In the present study the most important and most highly visited German speaking bladder cancer discussion board: http://www.forum-blasenkrebs
was evaluated with focus on gender differences of initial posters. The rationale for this study was to verify if differences between the online activity and communication of men and women as described in other cancer types (Gooden & Winefield 2007
; Gray et al. 1996
; Kiss & Meryn 2001
) also exist in bladder cancer. Such a profound analysis might help clinicians to better counsel their patients.
Generally the online board was well accepted, as shown by the high number of visits and threads and was almost equally used by both genders. In comparison to a general bladder cancer population, however, with a male-to-female ratio of 4-3:1, it revealed a higher online activity of women than of men. This was to our knowledge not yet shown in the literature in a cancer that affects both genders to a different extend. In the present evaluation the higher online activity of women was mostly due to the significantly higher number of healthy females posting for their male partners or family members than vice versa. Especially younger females (daughters or daughters in law) very often posted for their fathers or fathers in law whereas men rarely posted for their female partners. Similar observations were already made by Gray et al. and Kiss et al. who found women to be more active in caring for their male family members in self-help groups of prostate cancer patients than men in case of their partners breast cancer (Kiss & Meryn 2001
; Gray et al. 1997
Regarding age we found the mean age of concerned initial posters (w: 47 y, m: 52 y) to be about 15 – 20 years below a general bladder cancer population and about the same as in other discussion boards (van Uden-Kraan et al. 2009
). In case of bladder cancer the present results showed that mainly younger bladder cancer patients or their family members used the discussion board whereas old or very old patients remained underrepresented. Remarkably, however, the majority of posters were persons, who did not grow up with the Internet, demonstrating its high acceptance as a place for disease specific communication also in these age groups. Interestingly the mean age of patients, discussed about by relatives or friends, exactly matched with the mean age of patients with newly detected bladder cancer (66 y). This together with the fact that most cancers were newly detected bladder cancers led us to the conclusion, that especially patients and family members directly after a primary transurethral resection have a high need of information and counseling.
From point of view of addressed topics and motives for initial posting we found no differences between men and women and observed that most posters mainly looked for medical information. However women more often included their wish for emotional support and to share experiences in their postings than men. Regarding this (Mo et al. 2009
) recently described in their review of 12 studies diverging findings with some studies showing gender differences and others not. Even though they summarized that gender differences regarding emotional aspects were probably more pronounced in comparison of single gender discussion boards, our study also revealed significant gender differences on a mixed gender discussion board.
Evaluating language most initial postings included open or direct questions asking for medical information. Only a few postings were pure statements. Men however used this category significantly more often than women. Similar to Huber et al. many initial posters (50%) used a tentative language on the present online board (Huber et al. 2011
). We mainly interpreted this as an expression of their uncertainty in their role as novices on the discussion board. Additionally, we observed that women significantly more often used a tentative language than men, which underlined principal differences in the communication of both genders. Whereas in other studies key word analysis revealed a frequent use of acronyms by posters instead of medical terms (Huber et al. 2011
; Seale et al. 2006
), this was not the case in the present evaluation. Herein irrespective of gender medical terms were often and acronyms rarely used. These findings again reconfirmed our impression that the present discussion board was mainly focused on medical information and less on emotional support.
Answers were given almost equally distributed between both genders with a male to female ratio of 0.8:1 confirming the previously mentioned higher online activity of women than men. Most importantly, however, we found that irrespective of gender, 31.5% of the answers were given by only 1.0% of the most active posters on the present board. This revealed a rather oligarchic than democratic structure of the discussion board and is a critical point especially when it comes to the distribution of medical information and opinions. Similar structures of other online discussion boards were already remarked and criticized by others (Huber et al. 2011
). On the present board, however, we had the impression that answers were given with great care and were mostly medically correct.
As the most important limitation of the present study we have to mention the limited generalizability of the present data. Only a limited number of threads, e.g. of initial posters, were analyzed of only one German speaking bladder cancer online discussion board. Additionally only two referees (YL and MH) evaluated all threads, which makes from a methodological point view a personal judgment bias possible. Therefore the present data have to be interpreted with great care.
However, in conclusion we consider these data worth reporting as they analyze for the first time gender aspects in the peer-to-peer communication about bladder cancer on an online discussion board. This revealed that the online discussion board was well accepted and mainly used for medical information by both genders. We thereby had the impression that the online discussion board offers an easy, time- and place independent opportunity to establish rapid peer-to-peer communication for medical information and emotional support. Comparing communication between both genders however we found women to be more active as posters, more likely to seek emotional support and more often to want to share experiences than men. In contrast to that male communication was more focused on information. According to our believes these differences are worth realizing as they imply that - besides known biologic differences- also communicational gender differences exist and have to be taken into account for the treatment of bladder cancer patients.