The recent Report of the Surgeon General on Mental Health emphasized that mental health is fundamental to overall health and well-being; that it is a concern for everyone, not only the people seriously affected and their families; that mental disorders are illnesses similar to somatic disorders in most ways; that science has advanced our understanding of the causes of mental illness, as well as the behavioral and sociocultural impact of mental disorders; and that effective services are available in a range of settings and can be tailored to individual preferences. However, there is a gap between what science recommends and usual practices. Many barriers exist to services access, including stigma, discrimination, and a limited supply of well-trained providers. 1 Mental health in childhood and adolescence is defined by the achievement of expected developmental, cognitive, social, and emotional milestones and by secure attachments, satisfying social relationships, and effective coping skills. Mentally healthy children and adolescents enjoy a positive quality of life, function well at home, in school, and in their communities, and are free of disabling symptoms of psychopathology. 2 At all levels of severity, mental and emotional disorders can affect school performance, employment, physical health, family structure, housing, and quality of life. 3 These key messages from Mental Health: A Report of the Surgeon General are fundamental to children living with attention-deficit hyperactivity disorder (ADHD).
DIAGNOSIS AND TREATMENT OF ATTENTION-DEFICIT HYPERACTIVITY DISORDER
Attention-deficit hyperactivity disorder (ADHD) is characterized by two distinct sets of symptoms of inattention and hyperactivity-impulsivity or by one set of symptoms without the other. ADHD is the most commonly diagnosed behavioral disorder of childhood, occurring in 3% to 5% of school-aged children in a 6-month period. 4 There have been concerns linked to this rate of diagnosis around the possible overprescription of stimulant medications. However, recent reports found little evidence of overdiagnosis of ADHD or overprescription of stimulant medications. 5,6 Actually, fewer children (2–3% of school-aged children) are being treated for ADHD than suffer from it. Treatment rates are even lower for selected groups such as girls, minorities, and children receiving care through public service systems. 7,8 There have been major increases in the number of stimulant prescriptions since 1989;9 however, most researchers believe this is due to the better diagnosis and longer and more effective treatment of the prevalent disorder, with some exception.
Medical and public awareness of ADHD has grown a great deal, leading to longer duration of treatment and fewer interruptions in treatment. Whereas great progress has been made in diagnosing and treating children with ADHD, scientists and physicians are still struggling to understand the disorder among preschoolers. In an attempt to close the knowledge gap that exists regarding the treatment of ADHD in young children, the National Institute of Mental Health (NIMH) began a clinical trial in December 2000 that will study the effects of methylphenidate (MPH), a drug used to help older children function more appropriately, on preschoolers (ages 3–6 yr) diagnosed with ADHD. Scientists involved in this study, known as the Preschool ADHD Treatment Study (PATS), are concerned about the drug’s possible effect on the still developing personalities and brains of young children, as well as their inability to give informed consent. But they believe that such trials are the only way to answer concerns about the rising use of the drug to treat preschool-aged children. 10
As this public awareness grows, however, there needs to be a clear, shared picture as to what the treatments are and what they entail. Pharmacological treatments include the most commonly used psychostimulants to the less used antidepressants or neuroleptics. Psychostimulants have been found to be highly effective for 75% to 90% of children with ADHD. 11 Psychosocial treatment for the management of ADHD, particularly in the form of behavioral approaches for parents and teachers to use in working with children who have this disorder, are also effective. Behavioral interventions alone tend to improve targeted behaviors or skills, but they are not as helpful in reducing the core symptoms of inattention, hyperactivity, or impulsivity as they are when coupled with psychostimulants or other medications prescribed for ADHD, often termed “multimodal treatment.”
It is, however, necessary to note the importance of making appropriate and informed decisions when treating preschoolers with ADHD with these types of psychostimulants. Because of the current lack of knowledge among physicians of safety and dose information for treating very young children with medications such as Ritalin, many doctors have been prescribing the “off-label” use of several different drugs. One estimate suggests that 94% of drugs given to young children are prescribed in this disturbing manner. Among these drugs, Ritalin is high on the list, prescribed 226,000 times in 1994 for “off-label” uses. 12
Recent research has investigated medications and behavioral treatments and their combined effects on ADHD in community settings. The multimodal treatment assessment (MTA) study of ADHD was conducted by the NIMH to examine three experimental conditions: medication management alone, behavioral treatment alone, or a combination of medication and behavioral treatments. 13,14 The study, which included nearly 600 elementary school children between the ages of 7 and 9 years, compared the effectiveness of these three treatment modes with each other and with standard care provided in the community. 15 The MTA study was also designed to determine the relative benefits of these treatments over time by treating subjects for 14 months and then following samples for an additional 22 months. 16
The results of the MTA study indicate that long-term treatments of both medication plus psychosocial treatments, as well as medication management alone are both significantly superior to intensive behavioral treatments and routine community treatments in reducing ADHD symptoms. 14,17 The study shows that these differential benefits extend as long as 14 months. In other areas of functioning (i.e., academic functioning, oppositional behavior, anxiety symptoms, and parent-child relations) the combined treatment approach was consistently superior to routine community care, whereas single treatments (medication only or behavioral treatment only) were not. 14,18
BROADENING THE PERSPECTIVE ON CHILDREN’S MENTAL HEALTH AND ATTENTION-DEFICIT HYPERACTIVITY DISORDER IN PRESCHOOLERS
There are a number of key concepts that help define the current understanding of children’s mental health and illness. These concepts come from the premise that psychopathology in childhood arises from the complex, multilayered interactions of specific characteristics (including biological, psychological, and genetic factors) of the child, his or her environment, and the manner in which these factors interact with and shape each other over the course of development. 19 These concepts as outlined by the Report of the Surgeon General include the following: understanding a child’s particular history and past experiences as essential to understanding a child’s behavior, both normal and abnormal; the importance of considering developmental discontinuities where qualitative shifts in the child’s biological, psychological, and social capacities may occur; the innate tendencies of the child to adapt to his or her environment; the importance of age and timing factors; the child’s context, such as the caretaking environment; and the fact that the normal and abnormal development processes are often separated only by differences of degree. 20
The virtue of these and other developmental considerations when applied to children is that (1) they enable a broader, more informed search for factors related to the onset of, maintenance of, and recovery from abnormal forms of child behavior; (2) they help move beyond static diagnostic terms that tend to reduce the behaviors of a complex, developing, adapting, and feeling child to an oversimplified diagnostic term; (3) they offer a new perspective on potential targets for intervention, whether child-focused or directed toward environmental or contextual factors; and (4) they highlight the possibility of important timing considerations in a child’s development when preventive or treatment interventions may be specifically effective. 20
A basic knowledge of social and emotional development of children enhances understanding of mental illness in children by reconciling the concept of mental disorder as a state or condition with the ongoing development of the child. 21 Inattention or attention deficit may not become apparent until a child enters the challenging environment of elementary school. Such children then have difficulty paying attention to details and are easily distracted by other events that are occurring at the same time; they find it difficult and unpleasant to finish schoolwork; they put off anything that requires a sustained mental effort; they are prone to make careless mistakes and are disorganized; and they appear not to listen when spoken to and often fail to follow through on tasks. 22,23 The symptoms of hyperactivity may appear in very young preschoolers and are nearly always present before the age of 7 years. 23,24 Some hyperactive symptoms include fidgeting, squirming around when seated, and having to get up frequently and walk around. Hyperactive preschoolers often behave in an inappropriate and uninhibited way. 23
Many of the symptoms just mentioned occur in normal children, however, in children with attention-deficit hyperactivity disorder (ADHD) they occur more frequently in several settings and they greatly interfere with the child’s functioning. 22 By the time children reach their sixth birthday, a great deal has been learned about the roles they are expected to play and how to behave in accordance with these rules, how to control anger and aggressive feelings, and how to respect the rights of others. 25 This learning takes place through the developmental elements of social identity, self-regulation, and aggression and prosocial behavior.
Self-regulation that occurs by the end of infancy is understood by capturing the transition from helplessness to competence in terms of a child’s growing regulatory capacity. These capacities range from behaviorally conforming to the day-night rhythm of human existence to learning to soothe and settle once basic needs are met. Later, it means developing the capacity to manage powerful emotions constructively and keep one’s attention focused, thus gaining self-control. 26 Children are sensitive to society’s standards of good and bad and can begin to anticipate adults’ reactions and plan their own actions accordingly. 27 To do this, children must acquire the capacity to control their own behavior. Preschoolers usually lack a great deal of self-control and need a great deal of supervision. Learning to control aggression and develop other prosocial behaviors, such as helping others, are also a central process in preschool social development.
It is important to note that the context-specific organization of the child’s environment is constantly interacting with the biological properties of the child, which develops at different rates among individuals. 27 There is a broad range of variability that characterizes development of the preschool child. 27 The period of early childhood ends at the age of 6 or 7 years when children pass through the next biobehavioral shift and assume the accompanying social roles and demands. 27 It is by this age that children’s brains have achieved a level of complexity similar to adults and formal schooling begins. These developments in childhood provide essential preparation for the new demands and opportunities in the future. 27
How can researchers find clinical features of ADHD that will enable them to diagnose children with the disorder below the age of 5 years? As discussed above, many of these features can be detected as early as 3 years of age, including developmentally inappropriate activity levels, low tolerance for frustration, impulsivity, poor organization of behavior, distractibility, and especially an inability to sustain attention and concentration. But the challenge lies first in diagnosing the condition because ADHD is not a well-defined psychiatric disorder in this age group. To date, physicians and researchers have been fairly unsuccessful in diagnosing and treating children under the age of 3 years with ADHD. The Preschool ADHD Treatment Study (PATS) trial should result in an agreed on set of criteria that will enable physicians to make an accurate diagnosis of ADHD for very young children.
ATTENTION-DEFICIT HYPERACTIVITY DISORDER AND COMPREHENSIVE COMMUNITY-BASED MENTAL HEALTH CARE
Although the preschool and early school-age years are important developmental periods for the emergence of symptoms of attention-deficit hyperactivity disorder (ADHD) and their accompanying diagnosis, it has been recognized that ADHD is a long-term disorder with possible ramifications into adulthood. 28 A large percentage of children diagnosed during the preschool period will continue to need ongoing care for ADHD and accompanying symptoms throughout their childhood and adolescence. This warrants comprehensive approaches to care that hold promise for preventing and effectively treating secondary disorders in what is likely to be a high-risk population given the early age of ADHD diagnosis.
ADHD has been a prevalent problem for children and adolescents entering federally funded systems of care, a comprehensive approach to addressing the mental health needs of children with serious emotional disturbance in community settings. Although a substantial amount of literature has documented the efficacy of specific treatments for ADHD within randomized controlled trials, relatively little is known about the effects of community-based service initiatives such as systems of care on children with ADHD.
An analysis of children receiving services in 22 federally funded systems of care was conducted for the National Institutes of Health (NIH) Consensus Development Conference on ADHD in 1998. 29 Of the nearly 30,000 participants with reported DSM-IV Axis 1 diagnoses and descriptive data at intake into services, 13.5% had a primary diagnosis of ADHD. The primarily inattentive form of ADHD was diagnosed in 12.7% of these cases, mixed inattentive and hyperactive or primarily hyperactive diagnoses occurred in 76.3% of these cases, and 10.9% of these cases received a diagnosis of ADHD, not otherwise specified. Secondary diagnoses were reported for 1697 cases who had primary diagnoses of ADHD, resulting in an ADHD-specific comorbidity rate of 41.8%. Secondary diagnoses primarily included depression/dysthymia (17.7%), anxiety disorders (6.1 %), conduct/oppositional defiant disorders (39.8%), and learning disabilities (14.7%). ADHD was reported as a secondary diagnosis for 3% (n = 904) of all children receiving services within systems of care. The primarily inattentive form of ADHD was diagnosed in 17.7% of the cases; 69.1% of the cases received either mixed inattentive and hyperactive or primarily hyperactive diagnoses, and 13.2% of the cases were diagnosed with ADHD, not otherwise specified.
The children with diagnoses of ADHD were primarily male (84.1%) with a mean age of approximately 10 years. Nearly two thirds of the children were white, with relatively equal percentages of black (17%) and Hispanic participants (14.7%). The families were, for the most part, poor, with nearly 60% reporting yearly family income levels below the national poverty level for a family of four. Approximately 50% of the children were residing in single-parent, mother-headed families. Almost 80% of the referrals into the systems of care were made by schools, mental health agencies, parents, and social services agencies. Less than 2% of the referrals for children with a primary diagnosis of ADHD were from the primary or specialty health care sector.
To evaluate change across time in systems of care, a subsample of 415 children with primary diagnoses of ADHD who had valid Child and Adolescent Functional Assessment Scale (CAFAS) and Child Behavior Checklist (CBCL) scores at intake and 12 months were examined. Secondary diagnoses were reported for 173 cases of these cases, resulting in an overall comorbidity rate of 41.7%, which was comparable to the comorbidity rate reported for the larger sample. These children were slightly more likely to be females, white, living in families above the poverty level, and referred from mental health agencies than the larger set of children.
Reliable change indices (RCI) were computed separately for CBCL and CAFAS scores using the intake to 12-month change interval and the formula proposed by Jacobson and Truax. 30 RCI’s control for fluctuations associated with imprecise measurement and establish a relatively stringent criterion for determining the amount of change necessary to be confident that change has actually occurred from one measurement point to a second measurement point. This provides a more exact and individualized measure of change as compared with traditional statistical approaches to evaluating change. 31
Twelve percent of the subsample displayed reliable positive change (i.e., symptom reduction) on both the CBCL and CAFAS. However, when each measure was examined independently, 34.5% of the sample displayed reliable change on the CBCL and 27.7% of the participants displayed reliable positive change on the CAFAS. Almost 50% of the sample displayed reliable positive change when the measures were combined and the criterion of obtaining an RCI above the threshold for reliable positive change on one of the two measures was used.
It is apparent from these data that a large number of children with a diagnosis of ADHD are receiving services within systems of care, with over 40% with comorbid presentations. The diagnostic rates reported above have been consistent with and even somewhat higher in subsequent analyses of diagnostic and descriptive data collected since 1998 (Center for Mental Health Services: Annual Report to Congress on the Evaluation of the Comprehensive Community Mental Health Services for Children and Their Families Program, in press, 1999; Center for Mental Health Services: Annual Report to Congress on the Evaluation of the Comprehensive Community Mental Health Services for Children and Their Families Program, manuscript under review, 2000; Center for Mental Health Services: Annual Report to Congress on the Evaluation of the Comprehensive Community Mental Health Services for Children and Their Families Program, manuscript under review, 2001; Manteuffel B, Stephens RL, and Santiago R: Overview of the national evaluation of the Comprehensive Community Mental Health Services for Children and Their Families Program and summary of current findings. Children’s Services: Social Policy, Research and Practice, in press; Walrath CM, Mandell DS, Liao Q, et al: Suicide attempts in the “Comprehensive Community Mental Health Services for Children and Their Families” Program. J Am Acad Child Adolesc Psychiatry, in press). 32 It is also important to note that information on pharmacological interventions has been collected over the last several years with a history of stimulant medication use reported for 47% of children as they enter systems of care. A more in-depth description of the utility of the systems of care approach for children with a primary diagnosis of ADHD follows.
COMPONENTS OF THE SYSTEMS OF CARE APPROACH AND THEIR UTILITY FOR ATTENTION-DEFICIT HYPERACTIVITY DISORDER
From the time of the Joint Commission on the Mental Health of Children in 1969, there has been discussion about the need for a system of care for children with mental health needs and their families. However, until recently there was little clarity about such systems of care—how they might be organized, which agencies should be involved, what services should be provided, and what values and principles should guide service delivery. The Child and Adolescent Service System Program (CASSP) of the United States Center for Mental Health Services (CMHS) was undertaken in the early 1980s to define the system of care concept and philosophy to provide states and communities with a conceptual framework and model for planning and developing service systems. 33
The first value described by Stroul and Friedman for the system of care is that it must be driven by the needs of the child and his or her family. 33 In other words, the system of care must be child centered and family focused, with the needs of the child and family dictating the type and mix of services provided. 34 Implicit in this value is a commitment to serving the child in the context of the family. In most cases, parents are the primary caregivers for their children, and a central tenet of the system of care requires that it support and assist parents in their caregiving role, as well as involve parents in all decisions regarding service delivery. The system of care, as developed under CASSP and as now implemented through the Comprehensive Community Mental Health Services for Children and their Families Program sponsored by the United States CMHS, has a strong and explicit commitment to preserve the integrity of the family unit whenever possible.
The importance of tailoring services to the specific needs of the child and family is further emphasized in one of the 10 guiding principles for the system of care, namely that “children should receive individualized services in accordance with the unique needs and potentials of each child and guided by an individualized service plan.”34 The philosophy and values underlying individualized services are very similar to the philosophy for a system of care and include a focus on an individual child and family, provision of services within the most normalized environment; partnership with families, and use of a strengths-based ecological orientation and cultural competence. For the purpose of this article, the authors focus on the strengths-based ecological orientation. A thorough assessment of the child’s and family’s strengths, needs, and desires forms a basis for the development of an individualized intervention plan. Rather than emphasize pathology and service needs, assessments for individualized care need to emphasize the child’s and family’s assets as well as their deficits. 35
As stated by Olson, Whitbeck, and Robinson, 36 the strengths-based orientation allows the child and family to be seen as individuals with unique talents, skills, and life histories, as well as specific unmet needs. This orientation recognizes the fact that even the most troubled youngsters and multi-stressed families have strengths, assets, and coping skills that can be built on when creating an intervention approach. Furthermore, the strengths-based assessment is not limited narrowly to the mental health domain but takes an ecological approach to consider the child and family across all environments and life domains, including family, social, educational, vocational, medical, psychological, legal, safety, and others. This strengths-based ecological perspective not only drives the assessment but becomes the key factor in the development of the individualized service plan for the child and family.
Thus a diagnosis of attention-deficit hyperactivity disorder (ADHD) in a young child need not be regarded as a “life sentence” or as a predictor of school failure if managed appropriately. This is a condition that a child can live with. By using the system of care approach and working in a holistic manner across service sectors (including early childcare and educational settings as well as primary health care venues), children can be identified and treated earlier, providing them the best opportunity to succeed in their homes, schools, and neighborhoods. Similarly, families, if treated with dignity and respect, become effective and valued partners.
IDENTIFICATION OF CHILDHOOD MENTAL HEALTH PROBLEMS WITHIN PRIMARY CARE AND PRESCHOOLS
Unfortunately, mental health problems of children often go unrecognized by primary care providers and preschool teachers, including Head Start programs. For example, the Agency for Healthcare Research and Quality has just reported that the identification of mental health problems in children in primary care settings has consistently remained a significant problem. Roughly one in five children evaluated in primary care offices have significant psychosocial problems requiring some type of intervention, yet 60% of them do not receive the services that they need. 37
Underidentification of mental health needs in young children is a critical problem in nonmedical settings as well. Thus, in national data compiled by the Administration for Children, Youth, and Families concerning Head Start programs, 13% of children are identified by their local Head Start programs as having some form of “disability,” with over half of these children being identified as having a speech and language disability. However, Head Start program staff and national leaders have noted that the “speech and language” disability category is frequently misapplied rather than identifying the child as having a mental health problem. Thus, “mental health problems” are formally identified in less than 1% of Head Start children, a severe underestimate according to all other sources of evidence. 38 These problems are further compounded by the fact that although an estimated 3 million children ages 0 to 3 years are eligible for early Head Start, only 45,000 are currently enrolled by this program, thus diminishing opportunities for early identification and appropriate intervention. 39
These problems with underidentification pose difficult questions for policymakers and the public. What kinds of screening programs should be instituted to identify children in need? What educational efforts are needed to assist teachers, child development workers, and even primary care providers to identify children at risk without the accompanying fear that “labels” will unnecessarily stigmatize a child? What kinds of additional resources should be put in place to assist these children and families, and how should they be financed? Failing to identify children in need caused by lack of assessment and treatment capacity becomes a self-perpetuating problem; when too few children are identified, policymakers and planners may not devote sufficient resources to meet the underlying, unspoken needs. The results of such inattention may be far more costly for society later as these children grow older, experience difficulties entering the workforce, and confront their own problems in providing optimal environments for the next generation of children.
FEDERAL INITIATIVES THAT IMPACT THE CARE OF CHILDREN WITH ATTENTION-DEFICIT HYPERACTIVITY DISORDER
To begin to address some of these policy and service delivery concerns, the federal government has initiated a number of activities. To disseminate the results of the multimodal treatment assessment (MTA) study of children with attention-deficit hyperactivity disorder (ADHD), as well as other research in this area, the National Institute of Mental Health (NIMH), along with the National Institute on Drug Abuse, other NIH institutes, and the Department of Education sponsored a consensus development conference in November 1998. The goal of the conference was to dispel misconceptions, present even representation of the evidence, and to ensure that children with significant disorders of behavior, emotion, and learning are identified early and treated appropriately. 40 On March 20, 2000, a White House meeting, chaired by then First Lady Hillary Clinton, launched a new public-private effort to improve the appropriate diagnosis and treatment of children with emotional and behavioral conditions. Serious concerns were raised about the appropriate diagnosis and treatment of emotional and behavioral difficulties in children (particularly young children) and the need to take steps to address this issue. On June 26, 2000, Surgeon General David Satcher, M.D., hosted a listening session on children’s mental health. Input on critical issues in children’s mental health was solicited from the public through the World Wide Web and by mailing requests to over 500 individuals.
On September 18 and 19, 2000, the Surgeon General’s Conference on Children’s Mental Health: Developing a National Action Agenda was held in Washington, D.C. Three hundred participants were invited, representing a broad cross-section of mental health stakeholders, including youth and family members, professional organizations and associations, advocacy groups, faith-based practitioners, clinicians, educators, health care providers, and members of the scientific community and the health care industry. This conference enlisted the help of the participants in developing specific recommendations for a national action agenda on children’s mental health. Together with recommendations developed in a related meeting on Psychopharmacology for Young Children: Clinical Needs and Research Opportunities, held by the NIMH and the Food and Drug Administration (FDA) on October 2 and 3, 2000, these recommendations formed the basis of a national action agenda designed to meet the following goals:
- Promote public awareness of children’s mental health issues and reduce stigma associated with mental illness.
- Continue to develop, disseminate, and implement scientifically proven mental health prevention and treatment services.
- Improve the assessment and recognition of mental health needs in children.
- Eliminate racial/ethnic and socioeconomic disparities in access to mental health care.
- Improve the infrastructure for mental health services including support for scientifically proven interventions across professions.
- Increase the access to and coordination of quality mental health care services.
- Train front-line providers to recognize mental health issues and educate mental health providers in scientifically proven prevention and treatment services.
- Monitor the access and coordination of quality mental health care services. 41
Behavioral and developmental pediatricians play an important role in the diagnosis and management of children with ADHD, among other childhood mental health disorders. Many of these children are referred to specialty care because standard care protocols within pediatric primary care settings have failed or symptom severity, including high rates of comorbidity, warrants more intensive and specialized treatment. Health care professionals from behavioral and developmental pediatrics, however, have not been effectively linked with systems of care to participate as members of treatment teams who are providing services to children with serious emotional disturbance in community settings. For those large numbers of children with ADHD needing intensive community-based services, this may result in fragmented care that does not effectively support the development of strengths or reduce functional impairment at school or in the community. Closer collaboration between behavioral and developmental pediatricians and systems of care is needed to provide the integrated services that are needed to ensure developmental success for children with ADHD, particularly those young children who are in transition from preschool to school age.
Too young for ADHD? The answer would be “yes” if the consequence of a diagnosis is an inadequate assessment, hurried use of medication, lack of follow-up, and failure to use a comprehensive, family-centered, integrated approach to management. If, however, we develop early identification techniques—thorough and complete assessment approaches, involvement of family, child, school, and community in the decision making and management, careful evaluation of effectiveness of treatment interventions, and integration of treatment modalities—then the answer should be “no.” The younger the better for attention to the needs of young children can prevent adverse consequences in their growth and development.
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