Solving the Puzzle of ADHD
What can we do?
Posted Dec 05, 2018
The Society for Developmental and Behavioral Pediatrics (SDBP) has recently taken on the task of developing evidence-based guidelines to help physicians diagnose and treat children and adolescents with complex ADHD. Special consideration is needed when co-existing conditions, such as anxiety, depression, learning disabilities, anger, sleep disturbances, executive dysfunction, adverse childhood experiences and autism spectrum disorder (ASD), complicate the situation.
The process begins with an extensive review of all the literature on these topics by the principal investigators. Next the key articles are distributed to SDBP volunteer members to read and evaluate. My assignment covers the usefulness of certain medications in treating the symptoms of ADHD in children diagnosed with Pervasive Developmental Disorders, a condition now included in ASD.1 These reports, along with expert consensus opinions when necessary, will be woven into the final guidelines. Finally, the report will pinpoint specific areas where more studies are needed.
Although I am honored to participate in this admirable endeavor, there are unfortunately many barriers to successful implementation:
1. The American Academy of Pediatrics has already written and revised similar guidelines for physicians dealing with ADHD that are underutilized. ADHD is a complex disorder that requires considerable time and effort to treat, which are not always available in a busy primary care practice.
2. There is no gold standard to accurately diagnose and measure treatment response for ADHD. Unlike anemia or hypertension, where hemoglobin values or blood pressure readings can be compared to an accepted range of values for different ages or genders, mental health disorders can only be defined by the presence of specific behaviors that characterize the conditions.
ADHD, for example, has 18 different symptoms divided into three categories of hyperactivity, inattention, and impulsivity that need to be present. The diagnosis also requires that these behaviors have been present over a long period of time, occur in more than one setting, are more severe or persistent than their peers and cause impairment. The coda that the behaviors might be better attributed to ASD was eliminated in 2013. The response to treatment is measured by the reduction in the listed symptoms. The absence of objective evidence of abnormalities of brain scans, genetic markers, or serum neurotransmitter levels leaves the door open to questioning even the existence of ADHD and co-existing conditions.
One strategy to manage these dual problems of uncertainty and complexity is to divide and conquer. Our old high school friend, the Venn diagram, is one helpful construct to clarify the interaction of school and behavior difficulties thus:
The SDBP scientific approach is to find and apply the best and most recent medical research in the areas of ADHD and complicating conditions. Although sensible from the physician’s perspective, educational and family/emotional concerns are shortchanged. The multidisciplinary team functions best if it has a leader who understands all three circles to prioritize diagnosis and treatment. In the ICU, the intensivist consults various specialists, but ultimately has the responsibility to integrate opinions into action plans. As indicated in the diagram, the best person to solve the puzzle of complex ADHD is the parent.
Parents should assume the leadership of a team of medical, educational, and behavioral advisors. Parents know their child and circumstances better than anyone. Through long and often painful experience coping with their child, they have learned the hard lessons of what works and what doesn’t. Their estimation of the child’s true potential in grades and successful relationships will always be more valid than that of any expert. Despite their own misgivings, parents are in the perfect position to find and fix all of the problems presented in complex ADHD.
But to take their seat at the table, parents will need to learn more about the medical, educational, and behavioral aspects of care and build the confidence and communication skills to get the job done. Physicians, teachers, and counselors can continue to expand their roles as patient educators as well as care providers.
There are signs that change is coming. Susan dosReis and associates published their findings on caregiver treatment preferences for children with a new diagnosis of ADHD in 2017.2 After surveying parents, they found that the most preferred management strategies were one-on-one caregiver behavior training, medication use seven days a week, and therapy in a clinic and an individualized education program. In most instances, caregiver training, monthly out-of-pocket expenses, school accommodations, and provider specialty were all ranked ahead of medical treatment as preferred therapy.
In summary: ADHD is always complex. A parent-led team approach incorporating medical, educational, and behavioral consultants for diagnosis and treatment has the best chance for success. The medical home concept that provides care which is accessible, comprehensive, continual, coordinated, compassionate, culturally effective, and family centered ensures better outcomes and saves money. The new SDBP guidelines for managing complex ADHD will be even better when parents have the support and opportunity to participate in the process.
Ferenandez-Jaen A et al.: Efficacy of atomoxetine for the treatment of ADHD symptoms in patients with pervasive developmental disorders: a prospective, open-label study. J Atten Disord 17(6): 497-505, 2011.
dosReis S et al.: Caregiver treatment preferences for children with a new versus existing ADHD diagnosis. J Child Adolesc Psychopharmacol 27(3): 234-242, 2017.
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