Online Self-Help Medical Programs to Get a Checkup

The explosive growth of the Internet has brought about an equally rapid rise in the number of online self-help services designed to help people deal with a wide range of medical problems.

Many offer victims a chance to discuss their problem with others suffering similar afflictions, and some include experts who offer counseling and advice.

But there is a problem. No one really knows how well, or even if, any of the programs really help.

“We all kind of believe they are helpful,” said Kate Lorig, a chronic-disease specialist at the Stanford University Medical Center. “I certainly believe they can help, but there is no really strong evidence of that.”

So she has decided to find out. Lorig is about to launch a three-year study funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases designed to measure the success of an online self-help group of 600 people suffering from chronic back pain.

Lorig was drawn into the fray partly because of personal experience. She has worked with people with chronic diseases for 20 years, and she says she benefited from group therapy for a chronic problem of her own.

But the Internet has added a new dimension to the self-help arena. It is so accessible that more and more people are turning to it for answers to their problems. And sometimes they may be getting the wrong answers.

“There’s a lot of junk out there,” she said, but she added that there always has been. “People can go to the library, and a lot of what they find is junk.”

What the Internet has changed is accessibility, and Lorig fears that many of the programs may not be helpful and could even be harmful.

“I don’t think any of us really know how to do this stuff yet” on the Internet, she said. “We’re learning every single day.”

Lorig is still seeking participants in the study, and she and her colleagues have set up a Web site (https://www.stanford.edu/group/perc/backpain.html) at which people can enroll. Once 600 participants have been selected, the site will be closed to anyone who is not authorized.

All the participants will fill out baseline questionnaires, but once the program starts later this month or early November, only half will have access to the online program. The other half will serve as a control group, and they will go online only for the third and final year.

Online participants will share their experiences with everyone on the system and will receive advice from three experts on pain management--physician Richard Deyo of the University of Washington, physical therapist Marian Minor of the University of Missouri and psychologist Frank Keefe of Ohio University. Health educator Diana Laurent of Stanford, who suffers from back pain, will preside over discussion sessions.

“We are looking at things like pain, disability, interference with life activities, fear, depression, days lost from work, and health-care utilization” to evaluate the program, Lorig said.

She said the researchers picked back pain because it is such a common affliction and so difficult to diagnose that victims are frequently left to deal with it themselves.

A few causes are fairly easy to diagnose, such as tumors or compression of the spine, and are treated as medical emergencies. The first goal of the physician is to rule out those threatening conditions, but once that has been done the cause is largely guesswork, Lorig said.

“What you are left with is you’ve somehow strained or pulled something, and that’s literally impossible to diagnose,” she said. “That’s very frustrating to the patient,” causing many to take matters into their own hands.

That sometimes includes joining a self-help group, with mixed results.

“There’s not a huge amount of evidence that back pain programs for the most part do any good,” she said. “There are a few where it is shown to be effective, but most of the programs have very little effect.”

Back pain is a huge problem nationally, she added, with a significant impact on the health-care system.

“If we can prove anything, it could have very large policy implications,” she said. “Whether we can do that or not, I don’t know.”

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Lee Dye can be reached via e-mail at leedye@compuserve.com.