Thursday, April 23, 2009

Media's Rush to Publish Can Mislead Parents

On Monday, April 13, USA Today published a commentary titled “New Findings Raise Questions about Use of ADHD Drugs.” CHADD was asked to prepare a counterpoint; however, USA Today editors would not share their commentary with us before publication. They verbally informed us that they would significantly caution against the use of medications and they would criticize CHADD for receiving funding from pharmaceutical companies. We proceeded to prepare a statement.

You can read the commentaries here or go to the homepage of our website and click on Media coverage on effective treatment under the “In the News” section.

As the father of a son with AD/HD and co-occurring challenges, I found the limitations and conditions imposed by USA Today confining. I previously shared some of my personal understandings of the NIMH-funded Multimodal Treatment Study in the context of other published research with CHADD’s Professional Advisory Board. I share here my understandings as a Dad.

1. At six to eight years, participants’ functioning remained improved compared with their functioning at the beginning, but the research does not “prove” this is related to specific treatments.

2. First year of treatment does not predict functioning after three years.

3. Six to eight years after initial treatment, children and adolescents with AD/HD still had significant academic and social problems but not as bad as at the baseline.

4. Thousands of personal stories from across the nation received through CHADD, including my own, report that proven treatments, including medication and structured behavioral interventions, are helpful. The MTA study did not conclude that treatments were ineffective; merely that over time, when they no longer receive systematic research-based intervention, participating children continued to have significant problems.

5. We have known for several years that, on average, there is height suppression early on with the medication. Parents have to balance this “on average” finding with the consequences of not treating AD/HD and their degree of access to high-quality structured behavioral interventions, special education services, parent training, and other helpful supports.

6. We have clearly known since the 1999 Surgeon General’s Report on Mental Health that for a subset of the population, medications either don’t work or have severe side effects. This issue was not addressed in the six-to-eight-year MTA Study follow-up.

7. As with many medications to treat a variety of illnesses and disorders, over time people with AD/HD stop taking medication.

8. People who remain CHADD members over a multi-year period of time, such as my family, generally seem to have family members with more severe forms of AD/HD and/or co-occurring mental and learning disorders. Researchers need to increase their attention to the more severe forms of AD/HD and those with co-occurring disorders. This is not an MTA Study finding, just common knowledge.

9. We know that good treatment must be sustained over time.

10. We know that optimal treatment combines a variety of coordinated approaches. For years, CHADD has referred to these combinations of treatments using the NIMH phrase “multimodal.” Maybe we need a new phrase, since many people focus just on the NIMH-funded MTA study when this phrase is used.

11. Scientists don’t know all the answers. Scientists should think carefully about the message they send to parents, families, consumers, and the public when they get too involved in the complexities of a particular research methodology or when they advocate one intervention to the detriment of other helpful interventions. Scientists should not initiate therapeutic squabbles about therapies. We parents are just looking for the best combination of what works.

12. The media seems obsessed with focusing on controversy, disagreements between scientists, and negative stories. CHADD attempts to deliver a message to the public that is science-based, balanced with the lived experience of thousands of families across the nation. When the science is unclear, we are uncertain. USA Today attempted to make the issue black-and-white—medications are either good or bad—in its point/counterpoint. In reality, there is a broader toolkit of interventions. We parents, if we have access to these various interventions, choose what we think are effective combinations. Severity of the disorder influences these selections.

13. Access to professional services and natural supports plays an important role in an individual’s success in dealing with life and with the symptoms of AD/HD. This is not an MTA Study finding—it is common sense, based on what we know about a family’s lived experience.

USA Today criticizes the CHADD website for not having detailed warnings about medications and the MTA Study—before the study follow-up was actually published. But rather than rush with a headline, CHADD wants its professional advisory board to reach a consensus on what published studies actually say before we disseminate the information.

USA Today criticizes CHADD for accepting funding from pharmaceutical companies. Since 2001, we have published on our website the amount, percent, and company donating. We have published on our website our policies and philosophies, including avoidance of conflicts of interest, and we limit such funding to no more than thirty percent of our revenue. CHADD’s practices are consistent with those of the leading voluntary health agencies in America. We are a national network of 12,000 members and 70,000 involved constituents, with hundreds providing volunteer support for others. We happen to accept some funds from industry, which allows us to broaden our services and support.

These are my thoughts as a Dad dealing every day with the consequences of AD/HD in the family. The media and all of us should strive to not lump under a single label the variety, complexity, and severity that constitutes what we call today AD/HD.


1 comment:

Gina Pera said...

Thanks for setting the record straight, especially on this point:

"The MTA study did not conclude that treatments were ineffective; merely that over time, when they no longer receive systematic research-based intervention, participating children continued to have significant problems."

Emphasis on "when they no longer receive systematic research-based intervention." Meaning, the average care by the average physician, which I can assure you is too often shockingly slapdash and slipshod.

As for the media being in a rush to publish, I'm afraid we have some alleged scientists to blame for that as well. The media is always looking for the new, contrarian angle, and some grandstanding academics seem only too ready to do so. Why they would choose personal aggrandizement and publicity over sharing information that will do the most good is beyond me. But it is deplorable.

Of course, there are other scientists who mean well, but are too focused on the narrow picture. They also probably forget that, when they talk to the media, they are not talking to their learned colleagues who will put the information in context. That is extremely unfortunate.