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'Virtual' patient-support groups: use with caution [Print to PDF] [Print to RTF]

How we seek advice when faced with difficult and troubling problems has changed thanks to the Internet, and this is particularly true for those diagnosed with life-threatening medical conditions such as prostate cancer.

New research from a team of German scientists has invest...
'Virtual' patient-support groups: use with caution
How we seek advice when faced with difficult and troubling problems has changed thanks to the Internet, and this is particularly true for those diagnosed with life-threatening medical conditions such as prostate cancer.

New research from a team of German scientists has investigated these new patterns of communication by analysing how patients with prostate cancer interacted online.

Their findings, published in the journal British Journal of Urology (BJU) International, were based on an analysis of 501 threads posted during a 32-month period on Germany's largest prostate cancer forum, run by an umbrella group of organisations related to the disease.

The researchers looked at 1,630 posts on 82 threads started by men who had just been diagnosed and were looking for help in making decisions. The team excluded off-topic threads and any posts written on behalf of someone seeking advice.

Unlike many conditions, in localised prostate cancer individual treatment decisions cannot be made purely on medical grounds alone and there exists a wide-range of treatment choices for patients to think about. In addition by its nature, prostate cancer is an intimate, delicate and private condition. Dr Johannes Huber, lead author of the study from the University of Heidelberg explains that this is why social support plays 'a major role for most patients with prostate cancer'.

Their research shows that out of the questions posed in the forum, 79?% were specific and the remaining 21?% were altogether more general. The top 3 types of question were about therapy recommendations, treatment and any related side-effects; beyond these more practical queries, 46?% of the men were seeking emotional support.

Of the responses given on the forum, 40?% were treatment recommendations, 37?% offered emotional support and 28?% related anecdotal personal experiences.

The team also found that in the sample of responses they analysed, forum users were more likely to advise against surgery and suggest radiotherapy instead.

However, although these threads show an active and participative reaction to the condition, the scientists were surprised to see how reticent the forum users were to explicitly state the reality of the situation. '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,' explains 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 study also has implications for how conventional support groups can develop. It seems easier for people to express the emotional side of the support they need in a virtual environment, and the studies' authors recommend that conventional support groups incorporate this element into their programmes.

'Without the necessity of direct personal contact, patients readily receive information, advice and emotional support. Emotional issues are covered whether or not they are requested and the contact is much wider than focusing on facts and figures,' said Dr Huber. '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 understanding of their patients' needs and worries.'

However, the team did find that there were negative effects of seeking help from non-professionals, a common source of criticism from traditional groups towards their online counterparts. The message is therefore that the two forms of support must complement each other.

Finally, although the forum appeared to constitute a vibrant 'conversation' with many voices, upon closer analysis the team found that only 5?% of users contributed to 70?% of all the postings - hence only a few people shape the range of opinion. Given this statistic, the study's authors acknowledge that to fully understand the impact of online forums like this, more research into 'lurkers', the passive observers who read the questions and responses but don't contribute anything themselves, would need to be carried out.
Source: University of Heidelberg; BJU International

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Record Number: 33398 / Last updated on: 2011-05-12
Category: Miscellaneous
Provider: EC