Here's a new study on a subject that is dear to my heart, online support for Huntington's Disease families. The authors begin by noting the increasing importance of Internet medical support and citing a Pew survey which found that 36 million people in the U.S. are members of online support groups.

We have seen substantial growth in the number of visitors to the HDAC/HDlighthouse forum. The average number of unique daily visitors to the forum has grown from 900 in 2004 to 4700 in 2007.

The authors list several advantages to online support. First, it is available without time or geographical limitations. Second, people can think about and review their messages. I would add that this is very important in the HD community where individuals with the disease may be concerned about keeping up with a fast paced face to face conversation but can hold their own in an online discussion. Third, online forums offer greater diversity in experiences, opinions, and sources of information. Fourth, anonymity allows people to feel more comfortable discussing sensitive issues. Again, I would add that this is very important in the HD community where families with at-risk members may be 'in the closet' publicly about the disease to avoid discrimination.

1313 messages which were posted on an HD bulletin board between May 1998 and January of 2000 were analyzed. Although the authors do not identify the BB, it was almost certainly the Massachusetts General Hospital HD forum.

They found that just over half the posts offered informational and/or emotional support. By emotional support they mean expressions of empathy, encouragement, and sympathy. Nearly half of the posts provided network support which includes reminders of the availability of the forum group for support and letting people know they are welcome to participate.

Just over a fifth of the posts offered support with esteem. This category includes compliments and 'anchorage.' Anchorages involves letting the individual know that they are not alone but are a part of a community of members with a unique perspective who can help each other.

Least common was tangible assistance, offered in ten percent of the posts.

The authors raise the issue of inaccurate information. One fifth of the posts offered highly technical information about HD. They point out that people often come to genetic counseling with mistaken ideas such as that only one gender could get the disease or that the disease could skip a generation and that if this incorrect information were posted, others would be misled.

This has not been my experience. People do post inaccurate information, sometimes in the form of a question, but it is promptly followed by posts with the correct information, often with links to medical sites or journal articles.

Sometimes the inaccurate information comes from a clinician who is unfamiliar with the disease or has not kept up with the latest research and it is the online posters who offer the correct information. For example, someone's new physician insisted that his patient could not possibly have 'Huntington's chorea' because she did not exhibit chorea, despite a family history of HD, a positive gene test, and other characteristic symptoms. The poster was given information from a scientific journal which reported that one in eight HD patients had little or no chorea and exhibited dystonia as the predominate movement disorder instead.

However, it is certainly possible that there are forums out there which are less popular with HD families than the one researched and where inaccurate information is posted and not corrected.

The authors conclude that the results are similar to studies of online support for other chronic diseases and face to face support groups. They note that online support may fulfill some otherwise unmet needs. First, those at risk do better if they have support. Second, family members often feel that to speak openly of the problems and challenges in their home is a betrayal. In a situation of anonymity, they may be able to get the support they need.

As someone who has been involved daily in online support for a decade, I have been fortunate to see a lot of positive outcomes.

What is missed with analyses of bulletin boards is the rest of the social network. MGH had a very busy chatroom during that time period, with chatting taking place nearly around the clock. While anonymity is very important to participants, the existence of the private message function allowed chatters who were comfortable with one another to exchange email addresses or instant message contact information. In addition, a number of chatters and regular posters were able to meet in person at local support groups or national HD conventions. I know many, many people who have developed close friendships as a result of HD online support and there have been a number of marriages as well. I have personally attended three weddings so far.

Internet support has launched a number of websites and projects. For example, after meeting in the MGH chatroom, Steve Ireland, our friend Cristy Wolf, and I founded the Huntington's Disease Advocacy Center (www.hdac.org). We had the site up and running a year before we ever met in person. Jerry Lampson, an active member of the online Hunt-Dis mailing list, founded the HDlighthouse. LaVonne and Nathan Goodman founded the Huntington's Disease Drug Works to do individual trials and get information about potential treatments to the public.

There have been a variety of advocacy projects launched through the Internet by a variety of groups and individuals. For example there is currently much discussion in the U.S. about national antidiscrimination legislation with families writing letters and reporting on feedback from their Congressmen. There have also been advocacy efforts to get the FDA to make a decision on tetrabenazine and to get HD research groups to include family advocates in planning.

Individuals on the Hunt-Dis list have put together an HD memorial quilt. Anyone from around the world can send a square to be added to the quilt along with a bio page for the scrapbook. The quilt is displayed at the annual HDSA convention and can be requested for other HD conferences or conventions as long as the requesting group is willing to pay shipping charges both ways.

Internet support may not for everyone and needs vary over time. The frankness of discussions about caring for an end stage HD family member, about whether or not to have children, or about family dysfunction and abuse do scare people away. Some individuals appear to have experienced psychological distress from participating in Internet BB and mailing list discussions about difficult and sensitive topics.

As HD online support has evolved, there are different groups and BBs with someone different cultures, giving people choices.

The authors have made a solid contribution to the literature about coping with HD. They plan to continue their research.