Established in 1998, the free service on Joslin's Web site (www.joslin.org) allows people from around the world to log on and post questions or comments about their diabetes-related concerns. The postings are moderated by a team of Joslin specialists, including physicians, nurse educators, dietitians, psychologists and exercise physiologists, all of whom can offer important perspectives about diabetes care.
"There's a strong therapeutic effect from posting on the board," says the study's lead investigator, John F. Zrebiec, M.S.W, C.D.E., a clinical social worker at Joslin and a lecturer at Harvard Medical School. "Diabetes can be a lonely disease," he says. While face-to-face support groups can help remedy isolation, for many people coming into a new group can be a "very anxiety-provoking experience," Zrebiec says. "Entering a group via the Internet can feel much less threatening and gives people an opportunity to talk about themselves in a much more anonymous way."
For the study, Zrebiec, who runs several of the discussion boards, tracked more than 330,000 visits to the discussion boards over a period of six years. In 1999 and again in 2004, computer-based customer satisfaction surveys were e-mailed directly to some of the board's registered users.
Nearly 75 percent of respondents to the study's 2004 survey rated participation in the discussion board as having a positive effect on coping with diabetes. As one woman commented, "I have found an oasis where I can be encouraged, inspired and educated by people who sincerely understand my struggles."
What's more, 71 percent of respondents stated participation helped them to feel more hopeful. One user, a representative of many, found the discussion board to be an online lifeline. "Here in Spain, I have no support," she commented. "I honestly don't know what I would do without the support I find here. It really has transformed my life and had a positive influence on the way I cope with diabetes."
Researchers report some 25 million Americans have been involved in traditional support groups for chronic diseases, including diabetes. But the findings from the Joslin study suggest that Internet-based groups are particularly valuable because they allow people from any part of the world to come together at any time. In addition, cyber-neighborhoods may offer people a less threatening venue for discussing particularly sensitive concerns about diabetes. As one user reflected, "I never thought I would be able to control the blood sugars because of the binge eating. I never felt able to share it with anyone. Now, I feel some hope.... It made the difference between feeling like a victim and feeling in control again."
The study also found a skyrocketing increase in use of Joslin's discussion boards over time. Since the board's launch in 1998, the number of people accessing the boards has risen by more than 1,100 percent to nearly 332,000 user sessions, and the average length of a user session increased by nearly 9 minutes to an average of 16 minutes.
In both the 1999 and 2004 surveys, most of the respondents were over 30 years old and female. This is consistent with studies that find that a high proportion of health information seekers are female, Zrebiec says. Postings about managing blood glucose readings, what to eat, the emotional ramifications of diabetes, and complications ranked high among topics of interest. Respondents reported getting 80 percent of their diabetes information on the Internet.
While it is too soon to tell how these trends ultimately will affect diabetes management, it is already clear that the Internet is changing how patients find healthcare information and emotional support. "The study results suggest that people with diabetes and their loved ones have a need to come together in cyber-neighborhoods to talk with others about similar problems, to learn coping strategies, and to maintain hope," Zrebiec says.
Funding for this study was provided by Joslin Diabetes Center. The citation for the article is The Diabetes Educator, Vol. 31, No. 6, November/December 2005, pp. 825-836.
About Joslin Diabetes Center
Joslin Diabetes Center, dedicated to conquering diabetes in all of its forms, is the global leader in diabetes research, care and education. Founded in 1898, Joslin is an independent nonprofit institution affiliated with Harvard Medical School. Joslin research is a team of more than 300 people at the forefront of discovery aimed at preventing and curing diabetes. Joslin Clinic, affiliated with Beth Israel Deaconess Medical Center in Boston, the nationwide network of Joslin Affiliated Programs, and the hundreds of Joslin educational programs offered each year for clinicians, researchers and patients, enable Joslin to develop, implement and share innovations that immeasurably improve the lives of people with diabetes. As a nonprofit, Joslin benefits from the generosity of donors in advancing its mission. For more information on Joslin, call 1-800-JOSLIN-1 or visit www.joslin.org.