Cardiovascular Monitoring and AD/HD

Further Thoughts on the Recommendations

by Andrew Adesman, MD

Though the air is starting to clear, the dust has not yet settled on the issue of cardiovascular monitoring of children with AD/HD! What do I mean by this?

On April 23, the American Heart Association issued a statement recommending cardiovascular evaluation and monitoring of children and adolescents being treated with medication for AD/HD. The AHA not only suggested that a careful history and physical examination be done, it also recommended for the first time that all children and adolescents with AD/HD should have an EKG done prior to treatment with stimulant medication.

This recommendation created considerable concern among parents and controversy among professionals. In a blog entry posted on the CHADD website on April 23, I raised several concerns about this recommendation and its implementation. In the weeks following the release of the AHA statement, experts from the fields of pediatrics, child psychiatry, and even pediatric cardiology have raised serious questions about the scientific basis for the AHA’s recommendation to do electrocardiograms in all children and adolescents prior to treatment with medication for AD/HD. These experts not only shared my concerns about the logistical and practical issues of timing, cost, availability, and accuracy of EKGs, they questioned the very rationale for doing EKGs in children for whom there are no known cardiac risk factors. (Note: There is general agreement that children with certain specific clinical cardiac risk factors should have an EKG and/or evaluation by a pediatric cardiologist.)

In response to heated criticism from various medical experts, the AHA modified its recommendation. On May 15, the AHA released a Media Advisory (in conjunction with the American Academy of Pediatrics) to “clarify” its recommendations. Whereas the AHA originally recommended an EKG for all children with AD/HD prior to treatment with medication, they now state that it is “reasonable for a physician to consider obtaining an EKG as part of the evaluation of children being considered for stimulant drug therapy, but this should be at the physician’s judgment, and it is not mandatory to obtain one.... Treatment of a patient with AD/HD should not be withheld because an EKG is not done.”

This revision to the AHA position is a welcome modification and will reduce the sense of obligation that many physicians have been feeling with respect to performing EKGs on their patients. As a developmental pediatrician specializing in the evaluation and management of AD/HD, I can attest to the many logistical difficulties associated with getting EKGs done quickly and the clinical uncertainty that results when EKG findings are not completely normal. (As noted in the original AHA paper, there are many EKG findings that are variants of normal or mildly abnormal but are not clinically concerning from an AD/HD treatment standpoint.)

The AHA recommendations to do universal EKG testing on children with AD/HD prior to treatment with medication would have led to a multitude of false positives (erroneous reports of abnormalities in children) and undue clinical concern as well as a considerable cost and inevitable delay in therapy. It is fortunate for all that the AHA has backed away from its original recommendation.

It is important to note that the American Academy of Pediatrics has not endorsed the AHA statement in either its original form or its revised form. The likely reason for this is that, in their recently published, evidence-based guidelines for evaluation and treatment of children with AD/HD, the AAP did not recommend that EKGs be done in individuals if there are no cardiac concerns or risk factors. In short, whereas the AHA is recommending that an EKG be “considered” for all children with AD/HD prior to treatment, the AAP has thus far recommended that an EKG only be done where there are specific clinical concerns to justify it.

If the AAP stands by its previous recommendations, then its position will be “at odds” with the AHA’s revised statement. Although individual experts and medical organizations can reasonably disagree, there are several unfortunate consequences from such a public difference of opinion. For example, clinicians and patients will not be certain whose recommendations to follow. This will undoubtedly lead to inconsistency among providers regarding EKG screening. It is also quite likely that health insurance companies may chose to not cover the cost of an EKG in low-risk children if the AAP itself does not recommend EKGs for these patients. This would mean that there could be a significant out-of-pocket expense for a test that is recommended by some experts and clinicians but not others.

To the extent that the AHA is making recommendations for EKG screening that go well beyond previous recommendations of the AAP, they may find themselves wanting to “clarify” (i.e., retract) one sentence in their May 15 Media Advisory. In that document, the AHA clearly states that “the child’s physician is the best person to make the assessment about whether there is a need for an EKG.” How ironic! When it comes to determining the need for an EKG in a child with AD/HD, the AHA recognizes pediatricians as being the expert on a case-by-case basis—yet, they reject their collective judgment when it comes to developing generalized, evidence-based guidelines for evaluating and treating children with AD/HD.

Although the AHA policy revisions help to clear the air, I don’t think the dust can start to settle until the AAP makes a public statement about this issue. Until then, clinicians and families will have to pursue safe and effective treatment in the face of imperfect knowledge and conflicting opinions. Despite potential differences of clinical perspective among experts, I think it is important to remember that both the AHA and the AAP recognize stimulant medication as a safe treatment for children with AD/HD who have no risk factors for cardiac problems, and that even children with cardiac risk factors may be considered for treatment with stimulant therapy once an appropriate cardiac evaluation is performed. That is the heart of the matter!


Andrew Adesman, MD, is chief of developmental & behavioral pediatrics at Schneider Children’s Hospital, part of the North Shore-Long Island Jewish Health System in New Hyde Park, New York. A former member of CHADD’s board of directors and a current member of its professional advisory board, Dr. Adesman is recognized nationally for his clinical expertise in child development. He has authored many articles on AD/HD and co-authored the book Parenting Your Adopted Child.

Recovery, Hope, and Self-Esteem

This weekend I attended the annual scientific advisory board awards luncheon of the Depression and Bipolar Support Alliance, and also discussed with my son’s school mentor the impact of the lack of self-esteem has on his outlook and confidence.

The theme of the DBSA luncheon was to review recovery tools available online, 24-7. DBSA is increasingly using video to provide these tools. On their Web site, “Recovery Steps” is a major link. DBSA equates recovery with wellness.

The President’s New Freedom Report on Mental Health advocates the transformation of the nation’s mental health system to focus on recovery. The report and the DBSA link to the Substance Abuse and Mental Health Services Administration definition of recovery: “A journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.” For two years I have been thinking off and on about how the mental health concept of recovery, the fundamental principle in reforming the nation’s mental health system, applies to AD/HD and to my 17-year-old son with special needs. The CHADD professional advisory board has not yet focused its concentration on this question, but we will over time.

The SAMHSA National Consensus Statement on Mental Health Recovery identifies ten components of recovery. I will only focus here on one aspect of recovery—hope.

Hope is a focus on a “better future–people can and do overcome the barriers and obstacles that confront them.” Hope is internalized but can be fostered by peers, families, friends, and others. To SAMHSA, “hope is the catalyst of the recovery process.” During the past two weeks my son has been upset with some peers’ criticism of him. He is highly sensitive; criticism takes a life of its own and becomes a focus on the negative, rather than a focus on the positive.

My son’s mentor believes that my son’s sensitivity is heightened by low self-esteem and low self-confidence. Robert Brooks, PhD, has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." I have always used Brooks’ approach to emphasize with my son his strengths, while not exaggerating. My March 20, 2008 blog—“Self-esteem, Bonding, and Enjoyment”—focused on my son’s strengths. But offsetting strengths are the built-in doubts we all have, and that people with special needs may have even more of.

At the DBSA luncheon, consumers used the following words to describe their success in moving towards recovery—trusted, loved, depended on, understood, healthy, in control, and inspiring hope. My son’s mentor observed that self-esteem and confidence are “earned” through lived experiences. I wish to think that they are “developed” through life experiences. Within each of us is the memory conflict between positive experiences and negative experiences. Enhancing the positive experiences and reducing the frequency of the negative experiences is an objective. You can’t fake this—it is an internalized feeling. But hope and self-confidence can be fostered. It is much easier for me to stay focused on the positives, but life is this balancing act between the positive and the negative. The more negative experiences one has, the more difficult to have hope. (Not discussed here is the literature on resilience.)

CHADD will continue to brainstorm, think about, and examine the published science to conceptualize how the concept of recovery applies to a lifetime learning and living challenge called AD/HD. Using the SAMHSA definition, we know it is a journey of lifelong duration. We know that one has to “live a meaningful life.” Our role as parents, partners, and advocates is to assist our child or partner in achieving his or her own potential. (There are nine other interrelated components to recovery, according to SAMHSA, that will not be addressed here.)

Your thoughts, your experiences, and your approach can help CHADD more effectively think this through. Please share your ideas on how the mental health concept of recovery applies to living with AD/HD. Thanks for your time and sharing.

Clarke

Kids, Stimulants, and EKGs

by Andrew Adesman, MD

The American Heart Association (AHA) this week released a statement calling for pre-treatment electrocardiograms (EKGs) and routine cardiac monitoring for children and adolescents prescribed stimulant medication for attention-deficit/hyperactivity disorder (AD/HD).

The intent of the AHA’s call for closer cardiac monitoring is to identify the very small number of children and adolescents who may have an undiagnosed heart problem. Overall, I think this makes an already safe process even safer. That said, I think there are some considerations and implications involved with such a recommendation.

First, I am concerned that while this screening test will undoubtedly identify the extremely small number of children who indeed are at some increased risk, it will lead to a delay in treatment for most children, incur an additional cost for some, and create a significant number of “false positives” that will lead to additional consultations.

To the extent that many people do not live close to a pediatric cardiologist, this will create an additional burden of time, anguish, and money. Although the decision should indeed fall to pediatric cardiologists, there may not be clear, evidence-based guidelines guiding them as they counsel families referred for a cardiac clearance for stimulant medication. (This of course assumes that a family can easily locate and get in to see a pediatric cardiologist.)

Since some of these rare cardiac conditions would be important to identify for their own sake, perhaps routine EKG screening should be done on all children. In other words, although the decision to treat with stimulant medication will increase the likelihood of imminent cardiac problems in some children evaluated for AD/HD, these health issues should be identified in all children if feasible. However, this is likely to be a resource issue.

Perhaps the most important point is that the EKG screening may, to some extent, give a false sense of security to families and clinicians. That is to say, in some rare cases the screenings could miss some cardiac problems that would be important to identify if stimulants are to be prescribed.

The AHA’s recommendations likely reflect a consensus by its leadership on what is considered reasonable and feasible. I am certain the points I have enumerated in this blog entry were considered in developing the recommendation.

So what should be done as we move forward with this recommendation? First, we must make sure we’re eliminating as many hurdles as possible for parents. Health insurance companies should play their role by accepting EKGs as “medically necessary” so that there are no payment denials for asymptomatic children. Pediatric cardiologists will need clear evidence-based guidelines that will help them as they advise families. And primary healthcare providers, who initiate the evaluation for AD/HD, will have to help shepherd parents through the various evaluations to avoid a significant delay in treatment for AD/HD. I take solace in knowing that CHADD and its sister organizations will do everything imaginable to help parents with these new recommendations.


Andrew Adesman, MD, is chief of developmental & behavioral pediatrics at Schneider Children’s Hospital, part of the North Shore-Long Island Jewish Health System in New Hyde Park, New York. A former member of CHADD’s board of directors and a current member of its professional advisory board, Dr. Adesman is recognized nationally for his clinical expertise in child development. He has authored many articles on AD/HD and co-authored the book Parenting Your Adopted Child.

AD/HD and Research Priorities

Thank you for the opportunity to address the members of CHADD and the readers of CHADD’s Leadership Blog. As director of the National Institute of Mental Health (NIMH), I am excited by CHADD’s enthusiasm and support for progress in clinical and basic research that will lead to improved outcomes of individuals with mental disorders, including attention deficit/hyperactivity disorder. AD/HD is a neurobiological mental disorder that affects approximately five percent of school-aged children (G. Polanczyk and L. A. Rohde, 2007), and is recognized by the NIMH, the Centers for Disease Control, and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Recent studies have demonstrated alterations in neurotransmitter systems and cortical development that may be fundamental to AD/HD. Even though we do not yet understand the exact causes of AD/HD, we know that approximately 75 percent of the likelihood of developing AD/HD is due to genetic influences (S. V. Faraone et al., 2005), and the remaining risk is composed of environmental factors.

The National Institutes of Health (NIH) has a vision for clinical care built around four Ps: medical care that is predictive, pre-emptive, personalized, and participatory. NIMH has been pursuing this vision for mental disorders. Toward this aim, in 2007 we funded 219 awards related to AD/HD research, totaling over $80 million.* These investigations range from the identification of genetic and behavioral features to predict who is at risk, to early intervention studies to pre-empt the disability of AD/HD, to treatment studies aimed at identifying personalized, individual patterns of response to behavioral or medical interventions. As we continue to acquire information that will lead to improved therapies, we encourage the recognition of, diagnosis of, and treatment of AD/HD by clinicians. NIMH is also committed to participatory research, which means that we work closely with groups like CHADD to ensure that our science is relevant to the needs of patients and their families. For us, research is a partnership between our scientists who want to make a difference and our families who volunteer to ensure that research will make a difference.

Biomedical research rarely follows a linear path of progress. There are many years of incremental findings before major jumps forward. The renowned physicist Freeman Dyson famously noted more than ten years ago that “new directions in science are launched by new tools more often than new concepts"(1997). New tools for genetics and imaging are changing the landscape of biomedical research from mental disorders to cancer, leading to advancements in the understanding of many common disorders. The past year has been a time of extraordinary progress, arguably the beginning of a jump forward, in research on AD/HD. The first whole genome association study was completed, with data available in dbGAP so that researchers anywhere can join the search for genes associated with AD/HD (GAIN: International Multi-Center ADHD Genetics Project Database). Imaging studies demonstrated that children with AD/HD have delayed cortical maturation (P. Shaw et al., 2007). After years of debate about the validity of AD/HD as a behavioral or cognitive disorder, this finding reminds us that AD/HD is a developmental brain disorder, specifically a disorder of cortical development. Finally, studies in the past year support the value of treating preschool children with AD/HD with behavioral interventions (L. Kern et al., 2007), providing additional options to earlier data about the effectiveness of psychostimulant medication in this age group (B. Vitiello et al., 2007).

If we now view AD/HD as a disorder of cortical maturation, what does this mean about diagnosis and treatment? Should children receive repeated MRI scans to make a diagnosis or to follow treatment response? Can we find genes that regulate cortical maturation or develop novel treatments that accelerate it? Do early individual differences in cortical maturation have any predictive significance? These are all questions that will need to be addressed in future research. But clearly, in this case, a new tool has yielded a new concept. AD/HD is not just a behavioral disorder; it is a developmental brain disorder. This conceptual shift suggests not only an entirely new generation of research but new prospects for prediction, pre-emption, personalization, and, yes, participation of families as we generate research to pave the way for improved treatments, prevention, and ultimately cures for AD/HD.

Thomas R. Insel, MD
Director, National Institute of Mental Health


* NIH is currently improving the system for coding disease-related projects. This change may alter the number of projects that are coded as “AD/HD-related” in 2008 and future years; however this will not alter our strong commitment to funding the best basic and clinical research, working to improve the lives of AD/HD-affected individuals and their families.

REFERENCES

Faraone SV, Perlis RH, Doyle AE, Smoller JW, Goralnick JJ, Holmgren MA, Sklar P (2005) Molecular genetics of attention-deficit/hyperactivity disorder. Biological Psychiatry 57:1313-1323.

Kern L, DuPaul GJ, Volpe RJ, Sokol NG, Lutz JG, Arbolino LA, Pipan M, VanBrakle JD (2007) Multisetting assessment-based intervention for young children at risk for attention deficit hyperactivity disorder: Initial effects on academic and behavioral functioning. School Psychology Review 36:237-255.

Polanczyk G, Rohde LA (2007) Epidemiology of attention-deficit/hyperactivity disorder across the lifespan. Current Opinion in Psychiatry 20:386-392.

Shaw P, Eckstrand K, Sharp W, Blumenthal J, Lerch JP, Greenstein D, Clasen L, Evans A, Giedd J, Rapoport JL (2007) Attention-deficit/hyperactivity disorder is characterized by a delay in cortical maturation. Proceedings of the National Academy of the Sciences USA 104:19649-19654.

Vitiello B, Abikoff HB, Chuang SZ, Kollins SH, McCracken JT, Riddle MA, Swanson JM, Wigal T, McGough JJ, Ghuman JK, Wigal SB, Skrobala AM, Davies M, Posner K, Cunningham C, Greenhill LL (2007) Effectiveness of methylphenidate in the 10-month continuation phase of the Preschoolers with Attention-Deficit/Hyperactivity Disorder Treatment Study (PATS). Journal of Child and Adolescent Psychopharmacology 17:593-604.

Sports and Dads

As a kid I played organized sports, so part of the excitement of being a new father was anticipating watching my son play sports and even coaching him. This happened, but not as smoothly or effortlessly as I anticipated. The introduction of special needs and the child’s individual interests into the equation complicates life and requires modifications in expectations.

I pledged that I would not be one of those overbearing dads who forced sports onto his son. Neither would I be one of those dads who structured sports training programs for their sons that resembled Marine Corps boot camp. And I haven’t—I wanted to introduce my son to the positives of sport. My son has had obvious developmental delays and awkwardness since around the age of one to two. I wanted to introduce Andrew to sports at the appropriate age when his peers were being introduced to sports, as possible options for him to explore.

It took me awhile to understand the tremendous physical and mental effort it took for Andrew to participate in these activities, which did not come naturally. We first tried soccer—it didn’t work. My wife and I had met skiing, so we tried skiing lessons for several years. We stopped skiing after Andrew asked us, “Why do you put me through this?” Andrew tried karate, but didn’t like it. We tried baseball. Andrew liked baseball, but when it turned to kid pitch, he asked to stop playing. He still liked the design and flow of the game, however. We tried basketball and he liked it (Andrew is on the tall side). What made all these sports possible was a policy and practice within our community of residence: Every kid up to the age of 14 who wants to play, plays—and plays equally. Most of the coaches (but not all), most of the parents (but not all), and many of the kids (but not all) support this policy and encourage the kids who are not quite as skilled. Andrew was blessed with several good basketball coaches and I was able to serve as the assistant coach. It was a positive and enjoyable experience for both of us.

While baseball was a challenge for Andrew as a player, he has developed into a knowledgeable and interested fan. During the past few years we have bonded by attending baseball games together and keeping informed about the game. So, while my original hopes did not come through, other enjoyments and bonding experiences did occur. We rarely leave a baseball game early, for as a friend of mine reminds us, “You never know.” You try. You see what sparks an interest. You stay patient, flexible, and supportive. You build on the positives. At Andrew’s high school, he is required to participate in sports programs of his choice. While a great challenge, he also enjoys it. And he is healthier for it.

For many children with AD/HD, it seems that the mother is the key figure in their child’s life. On October 23, 2007, the AD/HD program at the University of Buffalo’s Center for Children and Families issued a press release, “Getting Fathers Involved in Children's ADHD Treatment Programs: Sports Element in COACHES Program Improves Dads' Participation, Relationships with Children.” For many fathers and sons, participation in sports at all levels can build a positive relationship.

During the past several months, CHADD has received letters of frustration from parents whose teen or young adult child was excluded from a non-school organized sports program because they were taking medication for the treatment of AD/HD. A former U.S. Olympic athlete contacted us regarding his dismissal for use of stimulant medications. These requests and recognition of the value of participating in sports encouraged the CHADD board of directors to adopt a statement of issues, considerations, and philosophy when thinking about children under medical treatment and their participation in organized sports programs.

Sport is a vehicle for building relationships and promoting good health. It may be an appropriate vehicle for some. CHADD advocates that anyone properly diagnosed with and treated for AD/HD is assured participation in their sport of choice.

Clarke

Self-Esteem, Bonding, Enjoyment

My son Andrew and I just completed six baseball spring training games in six days in Florida. We are fans of the Baltimore Orioles and the Boston Red Sox. This is our second time attending spring training. We enjoy it and grow closer given our shared interest.

I received a column published March 4 by child psychiatrist Dr. Michael Jellinek on "Kids and Self-Esteem," and I have been thinking about the topic ever since. Andrew is in eleventh grade and has learning differences and challenges. He passed the state mandatory math exam for graduation and he is very pleased. He missed the mandatory reading exam by a single point. He knows that next year he will pass the reading exam. He was honored for the highest grade in his math class. For a kid with few "accomplishments" during his academic career, each of these events has reinforced his self-esteem. Last year, Andrew came in second in a schoolwide spelling contest. This year he didn't study ahead of time and he went out of the spelling contest early. He has learned that effort is correlated to progress.

Andrew is a whiz at baseball statistics and team rosters. When at a game, many fans, overhearing the observations he makes to me, will ask Andrew questions about players and their situation. Andrew feels confident at the ballpark. He gets reinforcement from strangers about his knowledge. There is a familiarity about being at the ballpark, no matter the team or stadium. We both are knowledgeable fans and love attending. Andrew is a much louder and animated fan than me.

Dr. Robert Brooks has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." As Andrew grows and matures, his islands of competence continue to expand. He is still very anxious, still socially awkward, still has learning challenges, still has major doubts. But as a father, it is so reassuring to see his growth, maturity, and increasing self-esteem. He's also seventeen. It is a feeling of great satisfaction.

May we always look for and build the strengths of our kids.

Clarke

Medications and the Internet

Just this week, several news items related to medications and the internet have caught my eye.

The February issue of Behavioral Healthcare magazine emphasizes that "the casual scribbles that pass for handwriting and the extensive use of abbreviations, acronyms, and shorthand dose designations in many doctors' offices" are to blame for miscommunications with pharmacists. More than 12,000 prescription drugs are on the market and 3 billion prescriptions are authorized each year, with similar names, potential contraindications, and multiple formulation and dosage options. The magazine advances the use of e-prescribing to reduce errors, maintain a more accurate medication history, and allow patients and their families to have access to this information. Promotion of e-prescribing is available from the Center for Improving Medication Management. The American Academy of Family Physicians is a founding member of the Center. The Center demonstrates and enhances the advantages of e-prescribing.

While the magazine advances e-prescriptions, the magazine also reports that Drug Enforcement Administration regulations prohibit e-prescribing of "controlled" medications that includes stimulant medications for the treatment of AD/HD. DEA regulations require medical personnel to manually sign prescriptions for controlled medications. Nineteen U.S. senators are considering legislation to allow e-prescriptions.

Meanwhile, the Substance Abuse and Mental Health Services Administration (SAMHSA) published a National Survey on Drug Use and Health (NSDUH) report on the misuse of prescription medications for non-medical uses. Among these are 2 percent of adolescents aged 12 to 17 (an estimated 510,000 persons) who have used stimulant medications at least once for non-medical purposes. The science-based literature discusses the importance of medication as part of a "multimodal" treatment process. Medications need to be prescribed by medically licensed professionals with the legal authority to prescribe using evidence-based guidelines with the informed consent of the consumer and/or family to treat a precise disorder. It is regrettable that there is such misuse. The report documents that the adolescent rate of misuse is twice as high as the rate of adults aged 26 and older. The survey asks people about their illegal use of drugs. The NSDUH report is currently posted on the CHADD National Resource Center on AD/HD Web site under "What's New."

Last Saturday, President Bush devoted his weekly radio address to his administration's proposed 2008 National Drug Control Strategy. The President expressed his concern for the "growing availability of highly addictive prescription drugs online," and focused on painkilling medications. The President called for legislation to prevent internet sales of medications; you can hear the address on the White House Web site; click on Radio under "News" in the "In Focus" column.

While research studies on medications as part of "multimodal" treatment continue, concerns about non-medical misuse continue and administrators are attempting to improve the accuracy and safety of prescribing. CHADD will continue to monitor these developments and share them when appropriate.

Clarke