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.


Wednesday, April 8, 2009

Preventing Disorders Among Young People

We know that AD/HD is an abnormality of how the brain functions, and we know that there is frequently a genetic element. We also know that environmental elements can influence brain development. We know that natural supports, such as home and community, can influence the symptoms of AD/HD. Now, the Institute of Medicine (IOM), National Academy of Sciences (NAS) has issued a new report, Preventing Mental, Emotional, and Behavioral Disorders Among Young People. This 400-page report, by the most prestigious body of medical science in the United States, is expensive and can be ordered here through the IOM. The IOM recommends that the national government make healthy mental, emotional, and behavioral development of young people a national priority, establish goals, and provide needed research and service resources to address the goals.

The report concludes that early interventions can be effective in delaying or preventing the onset of mental disorders among young people. CHADD's sister organization, Mental Health America "concurs" with the IOM, "supports the faithful implementation of a strong science base," and observes that "unfortunately, we lack a national initiative to advance the use of prevention and promotion approaches to benefit the mental health of the nation's young people."

The IOM recommends that national priorities should include:

1. Individuals who are at risk receive the best available evidence-based interventions prior to the onset of the disorder.
2. Promotion of positive mental, emotional, and behavioral development for all children and youth.
3. Poverty is a serious adversity that must be addressed.
4. Neighborhood violence is another serious adversity that must be addressed.

The IOM recommends federal agency research coordinated with practice. The government should identify communities with significant community-level risk factors and target resources to these communities. Researchers and community organizations should form partnerships to develop evaluations. Screening programs should be linked to interventions and evaluations. Risk and protective factors for specific disorders should be researched, and a focus should be on strengthening accomplishment of age-appropriate developmental tasks.

CHADD will be asking members of our professional advisory board to summarize programs cited by the IOM "as worth duplicating across the country," including:

1. Clarke Cognitive-Behavioral Prevention Intervention
2. Good Behavioral Game
3. Positive Parenting Program
4. Promoting Alternative Thinking Strategies (PATHS)

Prevention requires an investment of commitment and resources. The nation's school districts should be more responsible and involved with such prevention programs.


You can read this blog and others like it at the HealthCentral website.