Problems in Diagnosing Attention and Activity
ABBREVIATIONS. AHP, attentional or hyperactivity problem; PROS, the Pediatric Research in Office Settings (PROS) Network; DSM-IV, Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Fourth Edition ; ADHD, attention deficit/hyperactivity disorder.
In this month's Pediatrics electronic pages is an important report by Wasserman and associates entitled “Identification of Attentional and Hyperactivity Problems in Primary Care: A Report From PROS and ASPN.” This extensive, valuable study describes how a sample of 401 primary care pediatricians and family practice physicians with a patient cohort of over 22,000 children found that 18.7% of them had behavioral difficulties and about half of these, or 9.2% of the total sample, showed evidence of attentional or hyperactivity problems (AHPs). Another main conclusion of the project was that the diagnosis was not made more frequently with children from “disadvantaged backgrounds.” This commentary explores the third principal result of the work, that “primary care assessment of AHPs lacks standardization.”
A great strength of the report is the large and diverse sample of children studied. If anyone needs proof of the value of the Pediatric Research in Office Settings (PROS) Network, here it is. It makes available an enormous cohort of the general population. Instead of the generally skewed samples typically used in studies based at tertiary academic centers, the Network provides a more realistic cross section of children in the community. Questions of incidence and prevalence are among the issues that can be investigated more accurately in primary care than at referral centers. 1
Another important conclusion of the report is that pediatricians can and do pick up a substantial number of behavioral problems in their practices. 2 Perhaps this detection is sometimes not as thorough as it should be, but it is probably not as negligent as some nonpediatric critics have claimed. 3
One need not dwell at length on the methodologic issues in the study, because every such effort has them. The fact that the physician participants were volunteers may have meant that they were not a representative sample of their respective professional groups. The authors' statement that their study “found little support for the contention that primary care clinicians use AHPs to label children with social and family problems” should not be misread as indicating that family dysfunction does not lead to behavioral problems or to an increase in AHP diagnoses. The Pediatric Symptom Checklist collects parental impressions of possibly worrisome behaviors, but does not separate challenging normal variations from behavioral dysfunction and does not yield clinical diagnoses.
The study's predominant finding, that “primary care assessment of AHP lacks standardization,” should be of concern to all us. Only about half of the clinicians studied (53.5%) used school reports in arriving at their diagnoses, and only 38.3% used the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Fourth Edition 4 criteria. This neglect of available information and standards can be variously interpreted. It could possibly mean that pediatric residents do not receive adequate training in a well-established diagnostic technique. Another explanation might be that even well-trained general and subspecialty pediatricians are being so overwhelmed by excessive pressures and concerns from parents and schools 5 and by the time constraints imposed by managed care regulations that they have abandoned lessons learned in their residencies. Some may be tempted to use an inappropriate trial of methylphenidate as a diagnostic test. However, a major alternative interpretation, briefly suggested by these authors, could be that the basic problem lies in the inadequacy of the current attention deficit/hyperactivity disorder (ADHD) diagnosis itself. This commentary urges the view that the lack of standardization and the confusion reflected by this study has been generated primarily by the nebulous official definition of ADHD.
In an effort to clarify the uncertainties about the diagnosis and treatment of ADHD, the National Institutes of Health convened a Consensus Development Conference on November 16-18, 1998, in Bethesda, Maryland. The printed statement issued at the end of that conference 6 acknowledged that “the disorder has remained controversial in many public and private sectors.” It recognized that “we do not have an independent valid test for ADHD, and there are no data to indicate that ADHD is due to a brain malfunction.” Recommendations of the panel included the requirement for “further efforts to validate the disorder,” that “basic research is needed to better define ADHD,” and that “a more consistent set of diagnostic procedures and practice guidelines is of utmost importance.” At the press briefing after the conference, when the report was presented to the public, the one panel member in primary care pediatrics acknowledged that “the diagnosis is a mess.” Only 1 of the 31 invited speakers had been asked to respond formally to the question, “Is ADHD a valid disorder?” 7 A brief summary of those comments and the suggested remedies follows.
ADHD is defined by the DSM-IV as consisting of 6/9 inattention or 6/9 hyperactivity/impulsivity symptoms for 6 or more months, present from before the age of 7years, with impairment in 2 or more settings, and not attributable to other conditions. Additional common assumptions about ADHD are: that the behaviors are clearly distinguishable from normal; that it constitutes a neurodevelopmental disability; that it is relatively uninfluenced by the environment; and that this disability can be adequately diagnosed by brief questionnaires. All these assumptions and some others should be challenged because of the weakness of the empirical support. The current criteria allow for a lumping together under one all-encompassing label of a diverse collection of normal but troublesome variations of temperament, problems in cognition, child-environmental dissonances, behavioral adjustment issues, and neurologic immaturities.
A wide variety of observers appear to be in agreement about the existence of a small group of readily recognizable “hyperkinetic” children, about 1% to 2% of the population, whose pervasive, disorganized high activity and extremely short attention spans are so marked as to be the clinical problem by themselves, not just as risk factors for other problems in adjustment. 8 Even for them, however, there is usually no certainty as to the source of the troublesome behaviors. 9 The discussion here is concerned with the problems in the diagnostic terminology of ADHD as applied to the other 5% to 10% or more of American children, who were surely most of the children being evaluated in the study by Wasserman et al.
- The supposedly abnormal ADHD symptoms are not clearly distinguishable from normal temperament variations. Temperament research reminds us that half of any population of children are more active and half are less attentive than average. Many children with these traits are completely normal or just annoying to their caregivers without becoming dysfunctional. 10 Dysfunction in the child's social behavior or school performance results neither from the number of these risk factors present nor from extreme ratings in any of them but when any number of them induces a “poor fit” with the particular environment and reactive problems in the child. 11 No solid empirical data support the current use of 6/9 of the activity or inattention behaviors as defining a true “cutpoint” where normal leaves off and abnormal begins. 12
- There is no clear evidence that the ADHD symptoms are related to brain malfunction. The ADHD behaviors are generally assumed to be largely or entirely attributable to a neurodevelopmental disability. The DSM-IV does not say so but the journals and textbooks do. 13 We know that various brain insults like lead poisoning, fetal alcohol syndrome, traumatic brain injury, and low birth weight may lead to increased activity and decreased attention span. Some preliminary brain imaging studies have shown inconsistent differences in children with the ADHD diagnosis but there is no proof to date that they are deviations . No consistent pathologic changes or structural, functional, or chemical marker is found with the current ADHD diagnosis despite extensive searches with sophisticated techniques. 14 Meanwhile, differences in brain function have been documented in healthy children with nothing more than normal temperament variations (eg, frontal electroencephalogram asymmetries). 15 Therefore, any new procedures purporting to establish a brain abnormality as the basis for ADHD must not just use any random controls but individuals with exactly the same traits as the subjects except for the behavioral dysfunction. And care must be exercised to distinguish cause from result and coincidence. Genetic contributions to normal diversities in temperament 16 and coping patterns 17 have been established, and must be born in mind when claims are made for a genetic basis for the clinical diagnosis of ADHD.
- The role of the environment and interactions with it is generally neglected in considerations of the cause of ADHD, which is typically regarded as being all in the child. However, there is evidence that the environment can produce 18 or at least worsen 19 the ADHD symptoms, as it does for other problems in adjustment. Beside the predisposing traits in the child something else is needed in the family, neighborhood, school, or elsewhere, like intolerance of those traits or various psychosocial stressors, to produce the behavior problem.
- The diagnostic questionnaires now in use for ADHD are highly subjective and impressionistic. The small numbers of items place much of the responsibility not only for reporting the behavior but also for making clinical judgments as to deviation in the eye of the beholder. Variations in experience, tolerance, or criteria used among parents and teachers are not allowed for. Such scales probably measure caregiver discomfort as much as they do the actual behavior of the child.
- The most important factors predisposing to the dysfunction in the majority of children getting the ADHD label today is probably not the high activity and low persistence but low adaptability 20 and cognitive disabilities, 21 especially working memory. 22
- The assumption that children not fitting into the modern classroom have defective brains lacks an evolutionary perspective. These traits may have been highly adaptive in primitive times in a world full of predators and in our own times in some situations outside the classroom. 23
- The small practical usefulness and possible harm from the ADHD label should not be overlooked. Some clinicians maintain that the ADHD label represents progress in that it takes the blame off of parents and schools, helps such children get needed services, and justifies the use of medication. However, the label has limited practical value to teachers, psychologists, and physicians in that it offers no description of the individual's particular problems and strengths and no suggestions for specific management other than medication. It involves an overly simple analysis of the complex phenomenon of attention. It may be misleading as to the true nature of the child's problems, such as abnormal environmental influences. The label may be stigmatizing and harmful in a variety of ways in the future. Finally, this over-simplification and lumping together of various complex conditions into one diagnosis is sure to be an impediment to scientific research.
Several steps are possible to find a theoretical solution to this confusing situation and to establish evidence-based criteria that can standardize practice in the area of AHPs and ADHD:
- When the DSM-IV is assembled, the system should finally acknowledge the existence and clinical importance of normal temperament differences. No longer should they be ignored, trivialized, or pathologized. Temperament variations are frequently annoying to parents and teachers but do not necessarily make the child dysfunctional without other factors. The important quality of adaptability should be understood for its central position in behavioral adjustment. Adequate recognition should be given to the power of these interactions to affect the behavioral adjustment of children. Neither environmental nor biological determinism explains all children's problems.
- A revised ADHD diagnosis would be more tenable if it were limited to those 1% to 2% of the population who are truly extremely “hyperkinetic,” that is, so objectively and pervasively hyperactive and nonpersistent that these traits are the problem itself. A categorical diagnosis of ADHD based on vague descriptions such as “often talks excessively” should be replaced with clearer, more reliable criteria.
- The other 5% to 10% of the child population now being labeled with ADHD would best be diagnosed as having either: a) annoying but normal temperament traits without dysfunction in social or school adjustment; b) adjustment disorders related to individual-environment interactions, often involving a poor fit; or c) a variety of other problems stemming from other causes largely in the environment like parental conflict and social disorganization or in the individual child such as learning disabilities and chronic-illness.
- Any diagnosis or suggestion of brain malfunction should be based only on some objective evidence of it.
- Until clearer diagnostic system evolves, children will be better served by the use of comprehensive functional assessments, consisting of separate evaluations of strengths and liabilities in the several areas of adjustment: social relations, task performance, self-relations, internal status, and coping patterns.
Through the PROS Network Dr Wasserman and associates have provided us with some useful information about the frequency with which primary care pediatricians and family physicians are diagnosing problems in attention and activity, and their report has made it quite clear that “primary care assessment of AHPs lacks standardization.” The authors recommend better standardization of the diagnostic process through “developing an evidence-based practice guideline on the diagnosis of ADHD.” Some skeptics may say that it cannot be done, but those in positions of responsibility must try. Because the current diagnosis is the product of the American Psychiatric Association's DSM committee and was accepted without alteration by the DSM-PC 24 Task Force of the American Academy of Pediatrics, the best way available to improve the criteria may be via the appropriate DSM-V Workgroup (Disorders Usually First Diagnosed During Infancy, Childhood, or Adolescence). The DSM-IV members of this group consisted of 12 psychiatrists, 4 psychologists, and no pediatricians---in other words nobody in ongoing direct contact with primary care issues. A major collaborative effort is needed to relieve practitioners, children, their parents, teachers, and the general public from the present confusion.
William B. Carey, MD
Division of General Pediatrics
Children's Hospital of Philadelphia
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