Online support helps patients with rare illness

Internet support forums for people with rare diseases can be extremely beneficial, especially if they have just been diagnosed, a new study published in the Journal of Medical Internet Research claims.

Researchers from the Department of Sociology and Anthropology at Lehigh University in Pennsylvania monitored messages and users in an e-mail listserv for sufferers of primary biliary cirrhosis, a liver disease, affecting around five in every 100,000 people.

"The internet provides a highly valued outlet for people who have a rare disease, primary biliary cirrhosis," say researchers. "It appears to be particularly valuable for those who are newly diagnosed and in need of health information, but it is an important resource for people at all stages of the disease."

The peer-to-peer support coupled with readily available medical information made the forum valuable for its users, said the study. The most popular topics discussed on the forum included peer support (40.6% of messages posted over two months) and sharing positive thoughts (25.3%).

According to figures quoted in the research, 90% of sufferers of primary biliary cirrhosis (PBC) in the US are women. The disease results from the body’s immune system attacking the lining of the bile ducts, and symptoms include severe fatigue and skin irritation. Patients often need a liver transplant.

Stigma is often attached to liver disease, as it is commonly associated with substance abuse. However, contrary to the researchers’ expectations, public stigma of the disease was hardly ever discussed (0.7%).

The researchers found that the reason why many sufferers turned to the listserv for help included searching for information and emotional support, as well as validation of their disease. As one poster quoted in the research put it: "Even though PBC is rare and doctors don’t know much about PBC, my doctor is going to learn. We will learn together."

Patients also turned to the listserv because the main symptom of the disease, fatigue, is invisible, and they felt that the effect this had on their lives was not understood. An email forum gave them a place they could share practical experiences with sympathetic people.

The researchers called for studies to be done comparing sufferers of PBC who use the listserv with those who did not to gain a better understanding of the role of the forums in the treatment of their illness.

Links

Journal of Medical Internet Research: The Role of Online Community for People With a Rare Disease