Traditionally, infertility support groups have offered patients the opportunity to meet others in a similar situation to themselves so they could share experiences and give each other support. In Bristol we had a very active donor insemination support group in the 1980s and an IVF support group in the 1990s. It was difficult to find people to organise the meetings and, with time, attendance became poorer and we no longer have a support group in our region.
So why are support groups failing? As treatment techniques become more successful, there is maybe less need for the same support groups. Sometimes a topic at a meeting may not be appropriate for everyone now that treatment options are more varied. There is more information available on the Internet from all over the world. Our own patient group can live many miles away and time due to busy working lives can impact on support group attendance. At a recent infertility network UK conference, we questioned people approaching our stand to ask them how they gained support and information. While many did not attend support groups as there wasn't one available or the timing was not right, all were accessing the Internet for information.
Our own websites were launched in 1995. They offer information and education to professionals and patients. In 1999 the website specifically for patients was launched and in 2003 we introduced a discussion forum or asynchronous chat room. Couples can discuss treatments and feelings with other couples. It can be completely anonymous and couples are able to access the site to post comments whenever they wish, 24 hours a day. The comments are displayed on web pages, to which other patients may post replies.
At the website address for our forums, one can register and log on - the first page shows all the forums, e.g. infertility, ICSI, pregnancies. By clicking onto a forum, it is also possible to see the number of topics being discussed, the number of postings, i.e. the people responding and the number of people just viewing the discussion without taking part. An example is the ICSI forum, which had more than ten topics. Within 6 months of launch the 'anyone else doing ICSI?' topic had over five thousand viewings and one hundred and eighty replies.
In 2004 questionnaires were handed out randomly to patients attending the Centre for Reproductive Medicine at the University of Bristol. The couples were asked to complete the questionnaire while waiting for their appointment and to return them on the way out. The questionnaires assessed their access to the Internet as well as their knowledge about and use of our website. Computer log files also provided details of the numbers of visitors to the site. There was a 78 per cent response rate to the questionnaires. The questionnaires revealed that 65 per cent of the 95 people that returned a questionnaire had access to the Internet. Of the latter 62 patients, 58 per cent had visited the website and 69 per cent of those visiting the website knew of the discussion forum.
A comparison of access to the forum between January and April 2004 showed there had been a huge growth in membership numbers (150 in January to 261 in April and over 400 by September 2004). The number of postings had also increased and by April we had thousands of postings on 191 topics in 9 forums. The numbers continue to increase.
Other forums are developing in line with patient requests, such as polls to conduct surveys and 'chit chat' forums so that groups formed in the infertility forum may discuss topics unrelated to infertility to offer support between treatment cycles.
The majority (60 per cent) of respondents independently commented that they felt online support was useful. Comparison with previous studies in our centre shows an increased awareness and use of the site by patients. People continue to make general comments online to the administrator and each other about the value of the site, suggesting new topics and requesting information.
In summary, there is evidence that patients benefit by using the chat room to access information from the Centre and gain support from other patients. The Centre can use the feedback to improve standards of care in everyday practice. In conclusion, there is no active support group in our region and our evidence shows that online support is replacing the conventional support group providing a good example of how new technology may meet the changing needs of patients.
This research was chosen for the prize presentation session of the Paramedical group at the European Society for Human Reproduction and Embryology (ESHRE) annual conference Berlin June 2004.