Support Groups, Good or Bad?

This article recently appeared on Eurekalert. The title, "Patients with type 2 diabetes belonging to online support groups have poorer health" makes it sound as if belonging to an online support group causes you to have poorer health, which doesn't make sense.

It also contradicts other studies like this one, titled "Joining a Support Group Improves Diabetes Treatment." The authors of this study wrote that "men and women who were enrolled in an online support program were nearly twice as likely to take their medication as prescribed and less likely to discontinue it."

So what's going on here? To try to figure it out, I read the full text of the article, "Participation of Patients With Type 2 Diabetes in Online Support Groups is Correlated to Lower Levels of Diabetes Self-Managemen."

In this study, 307 patients were recruited through an online survey. Then they were asked about their diabetes self-care management (glucose management, healthcare, dietary restrictions, and physical activity) and complications related to the disease, as well as their participation in online social groups and forums (duration, time, and intensity).

The researchers found that type 2 participants involved in online support groups had lower scores in "healthcare and self-management of diabetes." They also reported more diabetes complications.

I can think of several reasons for these results.

First, we know that correlation doesn't mean causation. A patient who follows medical advice and has wonderful control would be less apt to scour the internet looking for information about diabetes. But a patient who follows medical advice and is having problems controlling blood glucose might go online seeking more information. So the online support groups wouldn't be causing the lower scores for diabetes control, but the lower scores for diabetes control would be causing the people to join online support groups.

The authors also mention this, saying, "We cannot predict the direction of effects between using online support groups and the disease’s self-management, that is, we do not know whether the self-management complications are the cause or the consequence of such a type of online support group."

But many readers would just read the headline and conclude that participation in a support group caused the poor control.

Second, the study relied on self-reports, which may not be accurate. I might think my self-management was wonderful when it wasn't or vice versa.

Throughout the article, it's clear that the authors think patients need to have medical professionals in charge of information. For example, "it is likely that intervention or assistance is required for those patients to select and critically analyze the information they encounter in online support groups,"  "Hence, misinformation about diabetes, including its “cure”, has been found" [in the online support groups], and "information shared and consumed in online support groups may not be 100% rigorous and veracious."

It is true that online support groups can contain misinformation. But so can professional advice. The members of various groups must decide which information is credible and which is snake oil. When I was diagnosed almost 25 years ago, the professional view (with a few exceptions like Dr Richard Bernstein) was that low-carb diets are dangerous and one should follow a Food Pyramid that prescribed a lot of white bread and rice. Since then, the tide has turned, and now many, if not most, professionals are supporting low-carb diets.

But the point of this blog is not to criticize medical professionals. Rather, the point is that the headlines describing diabetes research, written by journalists trained to find interesting stories, not physicians, may be misleading.

So if you see a headline that sounds too good to be true ("Eating food X will cure your diabetes") or unlikely ("Just 30 minutes of exercise a day will make your diabetes go away"), make sure you read as much of the article as you have access to and decided if the headline is really supported by the evidence.