Thursday, June 19, 2008

Tips for Surviving a World Filled with (Mis)information: Part II

It’s Friday, 5:15 PM. As the CHADD staff is preparing for the weekend, a call comes in from a reporter seeking comment on an embargoed press release that will be widely disseminated on Monday. How should CHADD respond?

This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.

How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?

These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.

Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.

This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.

It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”

We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.

When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.

The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.

But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.

May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!


Thursday, June 12, 2008

A World Filled with (Mis)Information

Recently a Web site promoting natural health alternatives and healthful foods posted an article questioning the safety of medications used to treat attention-deficit/hyperactivity disorder. The article made unsubstantiated claims based on flawed interpretations of various scientific data.

Among its many false assertions, the article used a recent brain study to claim that stimulant medications actually stunt the growth of children’s brains. That is despite the fact that not one person in peer-reviewed, published science, including the researcher himself, has made that deduction based on the research findings.

The research cited showed that there were children with AD/HD who experienced a delay in brain maturation when compared to those without the disorder. The takeaway—and one always has to be careful with takeaways based on just one study—was that delay in brain growth is a product of the disorder, not caused by its treatment.

The article also claimed that a recent follow-up to the landmark Multimodal Treatment Study of Children with AD/HD (MTA) concluded that medication loses its effectiveness after a period of time. Yet, according to the lead researchers on the MTA, this was not necessarily the conclusion from the follow-up study’s findings. The study did affirm the need for continuous supports and interventions for treatment success to be maintained.

Because I value you as a reader, I will not continue to burden you with the unscientific misinformation that was presented in this article. The bottom line is that this author has a viewpoint to sell. He advocates diet elimination and supplementation plans as a way to treat AD/HD. But the scientific research that has been conducted in this area has found no evidence that eliminating foods from or adding supplements to one’s diet makes any difference in the treatment of AD/HD, a neurobiological disorder. Research has demonstrated the potential value of Omega 3 fatty acids, whether in your diet or with supplements.

Research has shown that a combination of education adaptations, parent training, behavioral intervention strategies, education about the disorder, and medication are the most effective ways to treat the disorder. There is no denying the importance of diet and exercise in maintaining a healthy lifestyle. But there is no evidence, at least so far, that diet makes any difference in treating AD/HD.

I plan to dedicate the next couple of blog entries to explaining how we can all become more discerning in evaluating the information we receive. I also plan to discuss the role CHADD plays in disseminating accurate and science-based information. We will discuss the media’s constant need for a new headline, and how this frequently leads to more misinformation. I hope you will continue reading.


Tuesday, June 3, 2008

Food Dye and Behavioral Issues

by Bryan Goodman

There are stories in the media today about the connection between food dye and behavioral issues. We realize some people may have questions about how food dye affects AD/HD symptoms. CHADD’s position on issues similar to this one is best expressed in the What We Know Sheet #6, published by CHADD’s National Resource Center on AD/HD. That fact sheet reads as follows:

Dietary Treatment/ Nutritional Supplements
Having a healthy, balanced diet is key to having a happy and healthy life. According to the Centers for Disease Control and Prevention (CDC), eating properly can help lower the risk for many chronic diseases, including heart disease. In addition, exercise and physical activity are recommended as part of an overall healthy lifestyle.

For more information on proper nutrition, click here. Dietary guidelines from the U.S. Department of Health and Human Services (DHHS) can be found here.

Dietary treatments eliminate - or take out - one or more foods in someone's diet (for example, sugar, candy and food with red dye). The idea is that being sensitive to certain foods can cause symptoms of AD/HD. Careful research, however, has not supported this treatment.

Nutritional supplements and large doses of vitamins add things that some believe are missing in a diet. Some people think diet supplements improve symptoms of AD/HD. Scientists have found no proof of this idea.

You can read this fact sheet in its entirety here. As always, CHADD encourages individuals to consult a medical professional when making decisions about treatment options for AD/HD.

Bryan Goodman is CHADD's director of communications and media relations and the executive editor of Attention magazine.