ATTENTION DEFICIT HYPERACTIVITY DISORDER IN CHILDREN AND YOUTH WITH CONGENITAL HEART DISEASE-PART II
PART II: What to Do If You Think your Child with CHD May Also Have ADHD
David D. Schwartz PhD ABPP
Neuropsychologist, Texas Children’s Hospital
Associate Professor of Pediatrics, Baylor College of Medicine
Katherine Cutitta PhD
Psychologist, Texas Children’s Hospital
Assistant Professor of Pediatrics, Baylor College of Medicine
Background
Children with congenital heart disease (CHD) are more likely to develop Attention Deficit Hyperactivity Disorder (ADHD) than their peers. One recent study at Texas Children’s Hospital found that children with CHD (regardless of severity) were more than twice as likely to develop ADHD compared to all other patients. Other studies have shown that roughly 30% of children with more complex CHD have significant attention problems and/or hyperactive/impulsive behavior. In Part I of this Practitioner’s Post, we described the core symptoms of ADHD and placed them in the context of a broader model of self-regulation and self-control, and reviewed the etiology (causes) of ADHD with a focus on children with CHD. In Part II, we explain what to do if you think your child with CHD also has ADHD, with a focus on evidence-based assessment and effective treatment and management strategies.
PART II: What to Do If You Think your Child with CHD May Also Have ADHD
Assessment & Diagnosis
As discussed in Part I of this post, signs and symptoms that your child may have ADHD include attention problems, hyperactive behavior, and/or impulsivity that interferes with their development or daily functioning or causes significant distress. Many people express concern that ADHD is over-diagnosed. Research suggests that, in fact, it is both over-diagnosed and under-diagnosed. Boys with behavior problems and Black children are more likely to be misdiagnosed with ADHD, whereas girls, and children with “quieter” forms of ADHD (such as the inattentive subtype), often go undiagnosed. This is why accurate assessment by a qualified professional is so important.
If your child has a relatively mild form of CHD and has shown otherwise typical development (aside from possible ADHD symptoms), you might first discuss your concerns with your pediatrician. To assess for ADHD, the American Academy of Pediatrics recommends that the healthcare provider take a comprehensive history and gather information about the child’s behavior in different settings, and the best way to do this is through use of standardized behavior rating scales filled out by the child’s parents, teachers, or other caregivers (teens and adults may also complete a self-report form).
However, if your child has more complex CHD or shows significant developmental delays, a more comprehensive neuropsychological evaluation would be recommended. Specifically, comprehensive evaluation would be recommended for all children and youth with CHD who:
Required heart surgery in the first few years of life
Have cyanotic heart disease
Have a history of mechanical support
Have a history of heart failure and/or heart transplantation
Have other complications or comorbidities (like prematurity, stroke, or seizures)
Have significant developmental delays or learning problems
Have a genetic syndrome
Neuropsychological evaluations provide a broad assessment of cognitive and psychological functioning. Your child will be given tests that examine their intellectual functioning, attention, executive functioning, learning, memory, language, and sensorimotor skills, among other areas. The tests typically involve answering questions, solving puzzles, and the like—they do not involve brain imaging, blood work, or other medical tests.
The reason to seek out a more comprehensive evaluation is that children with complex CHD often have other neurodevelopmental and neurocognitive deficits in addition to ADHD symptoms, and the evaluation can place these difficulties in the context of your child’s medical history. After the evaluation is completed, you will receive a comprehensive report documenting your child’s cognitive strengths and difficulties, as well as extensive recommendations for school, home, and therapeutic intervention if indicated.
To arrange for a neuropsychological evaluation, you can ask your child’s cardiologist for a referral, look into whether your local children’s hospital has providers on staff, or look for a neuropsychologist (or an appropriately-trained pediatric health psychologist if no neuropsychologists are available) in your area.
Intervention & Treatment
Because of their executive deficits, children and youth with ADHD often need additional support from parents, teachers, and other adults to stay organized, remember what they need to do, and complete daily tasks within time expectations. Adult oversight and support is therefore often needed to ensure tasks get done, even for older adolescents. This can go against many parents’ belief that their teen is old enough to take care of these things on their own, but it is important to recognize that performance of these tasks is much more challenging for people with ADHD. Even adults with ADHD may need organizational help from significant others, for example to ensure that they make appointments or that the bills get paid on time.
That said, there are treatments and interventions that can help minimize the impact of these problems on a person’s daily life. Extensive research has shown that there are three treatment approaches that have been shown to be effective for children and youth with ADHD:
Behavioral therapy (including parent management training)
Environmental supports and accommodations
Medication, especially in combination with behavioral supports
Each of these approaches is discussed in detail below.
Behavioral therapy/behavior management training. Children with ADHD often need a modified parenting approach compared to their peers. They tend to do better with clear rules, predictable consequences, and consistency in parenting across caregivers. They may need help keeping track of time and navigating transitions, and rewards may need to be made more immediate and tangible to better guide their behavior. Behavior management training for parents (and classroom behavior management training for teachers) is a very effective approach that can help families get a better grasp on their child’s behavior and reduce the impact of ADHD symptoms on daily life. Organizational skills training can also be helpful for teens.
For more information on behavioral therapy for ADHD, see here and here.
Environmental supports. ADHD-related school problems are best addressed through development of a comprehensive school plan that targets the behaviors of greatest concern in the classroom. This is typically done through a formal, written plan designed in collaboration with the school. In the U.S., two federal laws govern how children with disabilities like ADHD and CHD receive supports and accommodations in the (public) school environment: Section 504 of the Rehabilitation Act of 1973, and The Individuals with Disabilities Education Act (IDEA).
Section 504 is essentially anti-discrimination law designed to decrease barriers to educational opportunity. It applies to anyone with a disability that can affect their access to a free and appropriate public education. If a child qualifies, they will be given a written 504 Plan (parents should receive a copy) that provides classroom accommodations to ensure equal access to educational opportunity. Common accommodations for children with ADHD include preferential seating close to the teacher, extended time for tests and assignments, and organizational assistance.
The IDEA governs how states and public agencies provide early intervention, special education, and related services. To qualify for services under IDEA, the child’s disability must affect their educational performance and/or ability to learn and benefit from the general education curriculum. If the child qualifies, the school (in consultation with the family) will develop a written Individualized Education Program (IEP) that specifies learning goals and what the school will do to help student attain them. An IEP may also contain accommodations (such as a behavior intervention plan) similar to those found in a 504 Plan.
Private and parochial schools that do not receive federal funding are not bound by these laws, though many are still happy to work with families to develop an appropriate plan.
504 Plans and IEPs can both be implemented in the general classroom, and do not require the child to be placed in a special setting. By law, the school must place the child in the least restrictive environment possible to ensure adequate education. Of course, some students with more significant developmental or learning disabilities might benefit from part-time or even full-time placement in a resource classroom where they can get more individualized support.
For more information about school plans for children with ADHD, click here.
Medication. Medication can be life-changing for people with ADHD, reducing the core symptoms and giving them more control over their lives. ADHD medications should not change a person’s personality or make them seem like a “zombie”; if they do, this should be discussed right away with the prescribing physician, who can make changes to the medication or its dose.
A word about ADHD medication for children with congenital heart disease: Stimulant medications (amphetamine products and methylphenidate) are generally the most effective for treatment of ADHD symptoms, but there has been concern about potential adverse cardiac effects. A recent review article found “no evidence for serious adverse cardiovascular complications in children with known cardiovascular diseases including patients of congenital heart disease who are treated with stimulant medications,” but caution is still required when prescribing these medications for children with CHD. For example, studies suggest that stimulant medications may result in increases in blood pressure and heart rate. Consultation with a cardiologist before starting any ADHD medication is therefore strongly recommended.
For more information about medication for ADHD, click here.
Alternative treatments. Many parents are also interested in alternative approaches to treating ADHD symptoms. In general, there is currently no good scientific evidence that the following approaches work to treat ADHD or executive dysfunction: herbal supplements, homeopathic preparations, neurofeedback, or brain-training programs.
There is some limited evidence that micronutrient supplements such as omega-3 fatty acids might be effective in reducing ADHD symptoms, though more research is needed. Again, consultation with your child’s cardiologist is strongly recommended before starting any supplements to ensure there are no medical contraindications.
Finally, there is evidence that healthy living approaches may help alleviate some ADHD symptoms including executive dysfunction, though their effects are likely small. These generally beneficial approaches include:
Regular physical activity (keeping in mind any activity limitations your child may have)
A well-balanced diet of whole, minimally-processed, and nutrient dense foods that is low in added sugars, saturated fats, and sodium
Adequate sleep (10-13 hours/night for preschoolers, 9-12 hours/night for grade-school age children, 8-10 hours/night for teens)
Practices such as mindfulness and meditation
Summary & Conclusions
Children with CHD have an increased likelihood of having ADHD and executive dysfunction, especially if they have more complex, cyanotic, or palliated disease. Careful evaluation is important to best understand the symptom presentation and the degree to which symptoms might be part of a broader neurodevelopmental disorder. Surveillance of symptoms over time is also crucial, as the picture may change if they experience chronic hypoxemia or heart failure, or undergo cardiac surgery or heart transplant. ADHD interventions are similar for children with and without CHD, and include behavioral therapy and environmental modifications. Medication can also be quite helpful for symptom reduction, but must only be used under the supervision of a cardiologist. When all is said and done, people with ADHD and CHD can be quite successful in their lives, especially when given the appropriate supports.
Selected References
Berger S. Attention deficit hyperactivity disorder medications in children with heart disease. Curr Opin Pediatr. 2016 Oct;28(5):607-12. doi: 10.1097/MOP.0000000000000388. PMID: 27261563.
Gonzalez VJ, Kimbro RT, Cutitta KE, Shabosky JC, Bilal MF, Penny DJ, Lopez KN. Mental Health Disorders in Children With Congenital Heart Disease. Pediatrics. 2021 Feb;147(2):e20201693. doi: 10.1542/peds.2020-1693. Epub 2021 Jan 4. PMID: 33397689; PMCID: PMC7849200.
Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH Jr, Li J, Smith SE, Bellinger DC, Mahle WT; American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012 Aug 28;126(9):1143-72. doi: 10.1161/CIR.0b013e318265ee8a. Epub 2012 Jul 30. PMID: 22851541.
Shillingford AJ, Glanzman MM, Ittenbach RF, Clancy RR, Gaynor JW, Wernovsky G. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics. 2008 Apr;121(4):e759-67. doi: 10.1542/peds.2007-1066. PMID: 18381503.
Dr. Katherine Cutitta
Katherine Cutitta, PhD, is an Assistant Professor at Baylor College of Medicine and serves as the dedicated clinical health psychologist for the Heart Center at Texas Children’s Hospital. She works with families and children with congenital heart disease, as well as adults with congenital heart disease to help improve quality of life and establish heart healthy habits with managing congenital heart disease.
Dr. David Schwartz
Dr. Schwartz is a pediatric neuropsychologist at Texas Children’s Hospital and Associate Professor of Pediatrics at Baylor College of Medicine. He has long worked with children, youth, and young adults with congenital heart disease. Dr. Schwartz currently conducts neuropsychological evaluations of patients seen through the Texas Children’s Hospital Cardiac Developmental Outcomes Program and Heart Transplant Program, and he has completed research on cognitive outcomes in adult survivors of CHD.