Patients connect online for support

Almost a quarter of internet users in the U.S. who are living with a chronic disease have gone online to find others like them, a report shows.

Monday's report from the Pew Internet Project said 18 per cent of U.S. web users without a chronic disease have clicked online to find others sharing similar health issues.

The figure jumped to 23 per cent among those who said they're living with a chronic disease such as high blood pressure, diabetes, lung conditions like asthma, heart conditions or cancer.

In particular, those living with a rare disease often showed more intense networking with patients and caregivers, said report author Susannah Fox, associate director of the Pew Internet Project.

Like others surveyed, people with rare diseases relied on doctors as guides, the report's authors found based on a online survey.

Health professionals like doctors and nurses were most important for finding an accurate medical diagnosis, 91 per cent of those surveyed by telephone said.

Likewise, 85 per cent of people said they turned to health professionals for information about prescription drugs.

But for personal topics like finding emotional support, 59 per cent said they turned to fellow patients, friends and family. Similarly, 51 per cent said that's where they looked for quick relief for an everyday health issue.

Rare disorders such as those that affect fewer than 200,000 people in the U.S. at any given time seemed to amplify the need to expand a network, the researchers said.

As part of the report, the researchers also analyzed results of an online survey of 2,156 members of the National Organization of Rare Disorders.

For example, a woman living with a blood disorder wrote of her support group: "We can say things to each other we can't say to others. We joke about doctors and death. We cry when we need to. Together we are better informed. The support is powerful and empowering."

Self-diagnosing fears

Among those living with a rare disease and those who weren't, health professionals were the most popular source of information.

"The oft-expressed fear that patients are using the internet to self-diagnose and self-medicated without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey," the authors wrote.

"Advice from peers is a supplement to what a doctor or nurse may have to say about a health situation that arises."

In the general survey, internet users said most interactions with health professionals happened offline. Just five per cent reported receiving online information, care or support from a health professional, 13 per cent said they had online contact with friends and family, and five per cent they interacted online with fellow patients.

The report was based on a national telephone survey of 3,100 adults living in the U.S. by the Pew Research Center's Internet & American Life Project. The telephone interviews were conducted by Princeton Survey Research Associates from Aug. 9 to Sept. 13, 2010 in English and Spanish. The total sample findings are considered accurate to within plus or minus 2.5 percentage points, 19 times out of 20.

The report was released on Rare Disease Day, an international event to draw attention to gaps in health that exist for rare disease patients compared with other segments of society.

The Canadian Organization for Rare Disorders promotes state-of-the-art newborn screening in all provinces and territories and access to life-saving and life-enhancing medicines.