Monday, February 25, 2013

Preventing Harm on All Fronts

Guest blog by Ann Abramowitz, PhD, and Theresa E. Laurie Maitland, PhD

The tragic story of Richard Fee, as told by New York Times reporter Alan Schwarz, is one of the most disturbing pieces either of us has ever read. As the chair and co-chair, respectively, of CHADD’s Professional Advisory Board, we decided to share our own thoughts with the hope that we may enrich the discussion and help to prevent similar tragedies in the future.

First, a word about CHADD’s PAB: We are a group of professionals, mostly in academic settings, who also work clinically with children, teens, and adults with ADHD. Our task is to provide CHADD with scientific guidance, so that the information provided to the public is scientifically accurate and up-to-date. One of us is a clinical psychologist and full-time faculty member at a university, involved in the training of both clinical psychologists and child and adolescent psychiatrists, and also with a clinical practice. The other is an ADHD/LD specialist and coach who coordinates a university program for college students with ADHD and/or LD. The article describing Richard Fee’s situation left us with a number of questions and reactions.

The first question we had was whether Richard had ADHD. The article strongly suggests that he did not, based on his parents’ conviction that he had not had symptoms until after college, and we have to speculate whether the difficulty concentrating that arose at that time was more likely attributable to some other disorder. One of us is a psychologist, and the other is an educator. We are not physicians and cannot prescribe medication, but all professionals who work with people with ADHD should have knowledge of all evidence-based treatments for ADHD, including medication. It is well known that very rarely psychotic symptoms are triggered by stimulant medication, and it is also well known that stimulant medication must be avoided in individuals who present with psychotic symptoms. Careful assessment and diagnosis are crucial.

As Dr. Keith Conners explains in the New York Times article, the practice standards for the diagnosis of ADHD in adults call for corroborative evidence, and go far beyond the completion of self-report symptom checklists. If a clinician (psychiatrist, psychologist, or other health professional) relies only on self-report, the likelihood of misdiagnosis is significant. One reason is that it would be relatively easy to report having the symptoms of ADHD in order to obtain medication; a second reason is that the individual may have serious psychopathology, yet might lack insight into that fact. But even corroborative reports of symptoms by others are not sufficient evidence upon which to base a diagnosis; the history given by the parents, provided in school records, and the completion of psychological testing all enable the clinician to achieve the essential understanding for making an accurate diagnosis. ADHD does not first appear in adulthood. Misdiagnosing another mental disorder as ADHD can be catastrophic, particularly if psychosis is involved.

How can it be that a careful history may not always be done? We don’t know what happened in Richard’s case, but if the diagnosis was made based only on self-report this would be completely inconsistent with practice standards. Unfortunately, there may still be professionals who diagnose adults, including college students, without completing a careful history and conducting a comprehensive assessment to rule out other co-existing conditions. As the tragic story of Richard Fee demonstrates, this must change.

Let’s speculate that Richard refused to allow his parents to be involved. Perhaps he also refused to allow current corroborative report, such as instructors, roommates, or employers. How does a clinician conducting an evaluation of a young adult obtain the background information and current corroborative information while respecting his or her wishes and privacy? The answer, while never simple, must rest on this simple truth: Self-report of symptoms cannot be considered sufficient. By requiring new patients to provide corroborative information, clinicians may reduce the possibility of diagnosing individuals who are seeking to obtain stimulants or who may have other serious conditions. Our experiences working extensively with young adults, including many college students, suggest that it is important to help them understand why this is needed. We believe that working together with a caring clinician, those with ADHD find ways to obtain the information that is needed to reach a careful and accurate diagnosis. This often happens as trust builds, and as the young adult recognizes, and is grateful for, how much care and time are going into the evaluation.

A final, wrenching question nags at the reader: How can it be that the parents, describing their son’s severe psychopathology and Adderall abuse to the prescribing psychiatrists, went unheard? Even acknowledging the requirements of HIPAA, we cannot find an answer. The lack of involvement of families in the treatment of mental illness is a serious problem that professionals must grapple with, not just those specializing in ADHD. When working with young adults who are still dependent upon their parents for their livelihood and care, professionals need to create respectful methods for protecting the young adult’s confidentiality while designing ways to integrate in the input of family members and significant others. Given the potential lack of self-awareness in individuals with ADHD, it is essential to elicit feedback from others who may have more accurate observations and may also need help in learning about their loved one’s condition. Hopefully, we will learn from this tragedy as well as others that even given the boundaries of HIPAA there are ways to obtain information that is crucial for accurate diagnosis and appropriate treatment, and that harm can be done when this does not occur.

Yet, in our work with college students, we also cannot deny that stimulant abuse/misuse is a real problem on college campuses. This tragic story brings this situation to light. Hopefully, this article will be a wake-up call for professionals who are not following the standards for diagnosis of young adults with ADHD. The pressures for success and competition at college may drive some to seek medication to quickly improve their performance rather than choose the much slower process of changing their behavior and study habits.

The reality of stimulant abuse/misuse and the media’s continual focus on situations like Richard Fee’s can spawn other tragedies. The self-perception of many young adults who have or suspect they have ADHD can be adversely impacted. Painful stories like these can add to the misunderstanding and misinformation on ADHD that makes many of them reluctant to use medication or seek help. Although there are obviously young adults who feign ADHD symptoms just to get the medication, people working in campus learning centers may not ever meet them. Since these programs do not offer a quick fix, but offer ongoing help in learning to accept ADHD and learning how to live life productively with it, professionals tend to meet students who wait until they have “hit bottom” and are humiliated, devastated, and feeling as if they have “lost their smarts.” At this low point they are finally willing to find more effective ways of living with the chaos and challenges created by ADHD.

Many times young adults are not seeking help or not using prescribed medication because they report wanting to be “normal” and view help seeking negatively. They have adopted the beliefs from society that they “should” be able to control their attention on their own and that ADHD is not real. Yet they discover, with great trepidation, that they cannot seem to control their attention or behavior. When talking about the issue of students who may be feigning ADHD just to get medication, one student said, “I just don’t get it, who would want to fake having a life like mine?” Although stories abound about students whose lives were dramatically improved by Adderall or other medications, these are not typically covered in the media because they lack the sensationalism that the tragic stories have. There are thousands of young adults who truly have ADHD and use medication responsibly, and the media focus on those who were incorrectly diagnosed or treated can tragically undermine their confidence and hinder their decision to seek help.

Ann Abramowitz, PhD, is a professor in the department of psychology at Emory University and supervises residents in the division of child and adolescent psychiatry at the university's medical school. Theresa E. Laurie Maitland, PhD, is the coordinator of the Academic Success Program for Students with LD and ADHD at the University of North Carolina at Chapel Hill.
Visit CHADD's web page on Medication Abuse and Diversion.

Monday, February 4, 2013

Substance Abuse, ADHD, and Medications: The Real Issues

by Ruth Hughes, PhD

The story of Richard Fee, as reported in the New York Times on Sunday, February 3, is as heart-wrenching as it is atypical in ADHD treatment. This was not a story about ADHD or about Adderall, but rather about substance abuse and our highly stressed and fragmented mental health system. As the mother of a young adult in college, my heart went out to this young man’s parents, who tried so valiantly to stop the downward spiral of his addiction.

Anyone who works in mental health or who has attempted to use mental health services can attest to the fact that there are multiple barriers to receiving effective treatment. There are simply not enough providers to address the many patients needing services in a timely way. The HIPAA privacy laws make it impossible for clinicians to speak with family members or with other providers, especially when a young adult refuses to sign a release of information request. Payment rates through insurance are so low for mental health services that many providers will no longer participate. And no one is willing to pay for the time needed for the outreach and collaboration that is so necessary for proper diagnosis and treatment. When the symptoms of mental illness (or addiction) interfere with good judgment or accurate reporting by the patient, the effects of these problems are multiplied many times over.

This is not an excuse for the careful evaluation and collaboration that appeared to be missing in the treatment of Richard Fee, but rather a statement of the disarray of our health care system. CHADD, along with many other mental health advocacy organizations, continues to fight for a better health care system, for parity in mental health services, and for better coverage of treatment for all mental health disorders. And we work with our professional counterparts to ensure training of mental health professionals in the diagnosis and treatment of ADHD is easily available and of high quality.

Unfortunately, the scary tone of this article misrepresents the danger of stimulant medications. Stimulant medications that are taken as prescribed are highly unlikely to lead to addiction. In fact, the director of the National Institute on Drug Abuse, Dr. Nora Volkow, states, “Methylphenidate treatment for children with ADHD does not increase their risk for later substance abuse,” in an article summarizing NIDA research on stimulants and abuse.

It is important to separate several related but different issues on substance abuse, ADHD, and medications:
  • Stimulant medications are often an integral part of treatment for ADHD, but the most effective treatment will include parent/family training, behavioral interventions, and school/work support as well as medications. Stimulants can help a person’s brain work more efficiently, but medication does not teach coping skills.

  • Anyone with ADHD has a higher risk of substance abuse. This is not because of the medication, but because the disorder itself is characterized by impulsivity and poor recognition of consequences. Few people with ADHD choose stimulants as the substance of abuse. Alcohol, cigarettes, and drugs will be more of a temptation for a person with ADHD. We must help anyone with ADHD be forewarned that there is a higher risk of substance abuse and we must be vigilant for early warning signs.

  • Misuse of stimulant medication as a study aid is unfortunately a regular occurrence on college campuses. CHADD is strongly opposed to the diversion of stimulants, which undermines the legitimate use of stimulants for the treatment of ADHD. We regularly warn parents and young people of both the criminal and health outcomes associated with diversion. The federal government’s most recent survey of substance abuse (page 15) indicated that misuse of stimulant medication is present in about 0.4% of the population, or 1.1 million people over the age of 12. Although the incidence of misuse has declined from 0.6% in 2003, it remains a serious problem that CHADD is very concerned about.

  • Misuse is not the same as addiction. Stimulant medications may become addictive when taken in very large dosages or when injected intravenously. Few addicts choose stimulants as their drug of choice. As the New York Times article reported, “Very few people who misuse stimulants devolve into psychotic or suicidal addicts.” That said, one person who becomes addicted is one too many. It is crucial that our health care systems do everything possible to prevent the misuse or addiction of any prescription drugs.

One final comment. A meeting of a local CHADD group was referenced at the end of the article. Unfortunately, comments made by CHADD board member Jeffrey Katz, PhD, were selectively reported, and crucial information that both CHADD and Dr. Katz always include was not reported. When asked about the safety of stimulant medications, Dr. Katz reminded the audience that he was not a physician and that an individual’s response to medication can vary dramatically. At all times, a person thinking about or taking any medication for ADHD should work closely with his or her physician. In general, the potential side effects of stimulant medications when taken as prescribed are relatively mild and can be safely managed.

The science of ADHD, investigating the causes, diagnosis, and treatment, has improved dramatically over the past decade. It is absolutely crucial that our clinical practice and our public policy be based on the most recent and most sound facts. It is for this reason that we need to continue and/or increase funding support for better research in mental health and improved treatment in our health care systems. CHADD is committed to ensuring that evidence-based information from research is at the forefront of any discussions about ADHD treatment.

CHADD will continue to fight for better health care services, better training of providers, and the elimination of diversion of prescription medications. We want to be certain that all our members and the general public have accurate, science-based information about ADHD and any of the related disorders that often accompany a diagnosis of ADHD.

Visit CHADD's web page on Medication Abuse and Diversion.

Ruth Hughes, PhD, is CEO of CHADD.