Childhood emotional and behavioral problems: reducing overdiagnosis without risking undertreatment

During recent decades, the prevalence of diagnosed childhood psychiatric disorders has increased dramatically. In the United States parent-reported lifetime attention-deficit–hyperactivity disorder (ADHD) diagnoses increased from 7.8% in 20031 to 9.5% in 2007,2 a growth of over 20% in 4 years. Moreno et al.3 showed a 40-fold increase from 1994 to 2003 in the diagnosis of pediatric bipolar disorder in office-based medical settings. The reported prevalence rates of autism and its related disorders in the United States increased 57% between 2002 and 2006; in 2006 one US child in every 110 was classified as having an autism spectrum disorder.4 A review in 20095 estimated that one-fourth of young people experienced a mental disorder in the previous year, and about one-third across their lifetimes. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is scheduled to appear in May 2013. DSM-5 proposes to introduce new diagnoses likely to be common in young people (e.g. psychosis risk syndrome and temper dysregulation disorder); to lower diagnostic thresholds of existing disorders (e.g. raise the required age of onset for ADHD from 7 to 12 so that children whose problems started after the age of 7 will also be eligible for the diagnosis of ADHD); and to reduce the percentage of criteria required for childhood ADHD from 67% (6 of 9) to 47% (6 of 13; http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=383). This would further medicalize broad swaths of what may be expectable human behavior, and children with social and stress-related problems will be diagnosed and treated in medical settings quicker and more often.6 Opinions differ on whether this is a good or a bad development. Some argue that early recognition and treatment of childhood mental and behavioral problems can favorably impact the long-term course of a disorder,7 while others worry about the costs and risks of overdiagnosis and excessive treatment when it is given to those who don’t really need it.8 In this paper, we discuss factors that contributed to the increase in childhood psychiatric diagnosis. We then describe merits and demerits of psychiatric diagnosis and treatment for the children involved. We conclude with an approach that may reduce childhood psychiatric overdiagnosis without risking undertreatment. Although more awareness and better recognition of psychiatric conditions has undoubtedly contributed to the increase in diagnosed childhood psychiatric disorders, other factors may also have played a significant role. First, the chairs of DSM-IV8 and DSM-59 themselves state that DSM-IV inadvertently contributed to ‘unreal’ epidemics of childhood ADHD and autism, by lowering the threshold for these disorders. Second, drug companies successfully use their vast resources to promote the diagnosis of psychiatric illness and the use of psychotropic drugs.10 For example, the sudden rise in the rates of childhood bipolar disorder occurred under pressure from opinion leaders and drug company marketing.11 Third, epidemiological studies systematically overstate rates of disorder because lay interviewers are unable to judge whether the symptoms they elicit are clinically significant.12 Because these studies overestimate prevalence, they also overestimate undertreatment in community samples. Fourth, societal factors (both parents working longer hours) may increase the burden of daily activities of parents and children and reduce tolerance for individual variation.13 And fifth, parents, teachers, and patients may pressure professionals to diagnose9 under the influence of advertising and/or the Internet and because of the merits of a diagnostic label described below. Diagnostic classification is useful for communication between professionals, etiological and epidemiological research, the search for proven effective treatments, and reimbursement of interventions.14 A confirmed diagnosis may also have merits for the child itself. First, it may offer a favorable explanation and recognition for experienced problems, bringing relief and hope to troubled or troublesome children and their families, and freeing all parties from guilt.15, 16 In this respect, medicalization can be helpful by providing people with meaning, understanding, and legitimizing of experienced impairment.17, 18 Second, a diagnosis opens the door to treatment, to special education services at school, and to reimbursements of the costs of these interventions. Note that the highest rates of ADHD diagnosis in the USA in 2007 were among children with Medicaid coverage.2, 19 First, a diagnostic label can lead to negative parental and teacher expectations, which may be perceived by the child who in response may underperform (Pygmalion effect).20-24 Second, children diagnosed with a mental disorder may be stigmatized and face prejudice and discrimination.25, 26 Third, children often agree with these stereotypes and apply them to themselves.25-27 Self-stigma is associated with damaged self-efficacy, low self-esteem, and reduced confidence in the future. Fourth, in later life a childhood psychiatric diagnosis may lead to difficulties getting life insurance and disability insurance.8 Fifth, ethical problems may arise when troublesome behavior is psychiatrically labeled and treated in ‘those who have the least power to just say no – children’.28 Sixth, a diagnosis may create a spurious impression of understanding so that we have to look no further.29 A classic criticism against medicalization applies: the ‘medical gaze’ locates the problem and the place of treatment within the individual child, and neglects possible social dimensions of the problem.30 It is important to avoid false positives whenever possible, but the risk is that every reduction in false positives may lead to an increase in false negatives – failing to identify children who would indeed benefit from diagnosis and treatment. In line with for example the UK’s National Institute for Health and Clinical Excellence (NICE) ADHD guideline,31 we advocate the use of a cautious watchful waiting, and stepped diagnosis and treatment approach. For the many unclear boundary cases encountered in primary care, access to help should begin with a pre-diagnostic stage. Initial watchful waiting, and educational, normalizing, and psychosocial interventions should not require a prematurely definitive DSM-IV diagnosis. Easy access to interventions at a pre-diagnostic stage has several advantages. First, it reduces the number of children misdiagnosed with an inappropriate psychiatric label. Second, children who do need a psychiatric diagnosis and psychiatric treatment are not missed. In cases where pre-diagnostic interventions prove insufficient, more elaborate assessment and treatment will be provided. Third, time and money are saved when unnecessary treatment is avoided. Fourth, research suggests that many people choose not to pursue mental health services because they want to avoid a diagnostic label.25 The provision of specialized help without a confirmed diagnosis may lower the threshold for children and families for help that may benefit them. In many countries the only way to get funding for treatment is through a formal diagnosis. This may have promoted the search for pathology in mild cases, leading to expensive expert-hours spent on diagnostic procedures that are not really needed. Hence, it may be worthwhile to reorganize health systems so that watchful waiting and brief treatment is reimbursable without a confirmed diagnosis. For example, in the Netherlands ‘primary psychological health care’ is an easily accessible social service in which a number of sessions with a psychologist are reimbursed without a confirmed diagnosis. Insurance companies that pay for such an approach may actually save money, because in many cases expensive diagnostic and treatment procedures may not be necessary. Cautious stepped care in pre-diagnostic stages of childhood emotional and behavioral problems may spare many children the burden of a diagnostic label, without risking undertreatment. This approach will likely become increasingly important with the forthcoming DSM-5 which proposes further expansion of the boundaries for childhood psychiatric disorder.