Helping Parents Make Sense of ADHD Diagnosis and Treatment
Mary Margaret Gottesman, PhD, RN, CPNP
J Pediatr Health Care 17(3):149-153, 2003.
Posted 05/16/2003
Introduction
The early months of the new school year are often marked by a familiar tale
from parents: "The teacher says he can't come back to school until he sees a
doctor and gets medication to help him calm down." Parent reactions to this
demand by teachers vary from indignation to concern to a desire for a quick
fix. Pediatric nurse practitioners (PNPs) are in a key position to help
assure that the child suspected of having ADHD receives a thorough and
appropriate evaluation and a comprehensive plan of care. Parent support and
education through the processes of assessment, diagnosis, and development of
an effective treatment plan are critical elements in achieving good outcomes
for the child and family (Selekman & Snyder, 2000). Below are answers for
questions parents ask frequently.
Who Gets ADHD?
ADD/ADHD is the most common psychiatric condition diagnosed in children,
affecting about 5-10% of all children, or approximately 1.5 million children
(Barkley, 1998). It is more frequent in boys (9.2%) than girls (2.9%)
(Baren, 2002). Many people are unaware that it affects adults as well, as
many as 6 million (Ingram, 1999). Attention deficit with hyperactivity and
impulsiveness affects boys more often than girls, but girls are more likely
to have the attention deficit disorder without hyperactivity variant (Gaub &
Carlson, 1997). Hence, many girls are not diagnosed until middle school or
later when learning tasks become more complex.
What Causes ADHD?
No one gene or structural abnormality of the brain accounts for the
diversity of the ADHD spectrum (Castellanos, 1997). Rather it is believed to
result from the complex interaction of genetic, biological, and
environmental risk factors (Conners, 2003).
About 25% of children with ADHD have a first degree relative with ADHD
(Hunt, Paguin, & Payton, 2001). Other genetic risks include the presence of
parental mood and conduct disorders, learning disabilities, and antisocial
behavior. Parental substance abuse and smoking may also be markers for risk
since many adults attempt to improve their sense of well-being via the
effects of alcohol, nicotine, and drugs (Beiderman, et al, 1997).
Biological risks also increase the likelihood of ADHD. Among the known
associations are maternal smoking and alcohol use during pregnancy,
especially during the first trimester (Biederman, et al., 1998). Preterm
labor, impaired placental functioning with resultant impairments in fetal
nutrition and growth, as well as impaired oxygenation leading to fetal
distress and low birth weight, infections of the central nervous system,
seizures, and serious head injury are also associated with a higher
incidence of ADHD (Saigal, 2000). Preterm infants, especially those with
intraventricular hemorrhages, are at greater risk, as well (Seubert,
Stelzer, Wolfe, & Treadwell, 1999).
Exposure to heavy metal toxins such as lead and mercury, as well as exposure
to carbon monoxide fumes, are known environmental risks for behavior
disorders (Conners, 2003). Poor childhood diet, family stress, and living in
poverty further increase the risk (Jakovitz & Sroufe, 1987). Newborn illness
and stress from the care environment of the NICU also increase vulnerability
to the disorder (Gunnar & Barr, 1998). In addition, children with the
extremes of easy and difficult temperament appear to be at greater risk for
ADHD and a variety of mood disorders (Conners, 2003).
While ADHD is the result of the complex interaction of a variety of risk
factors, each individual's outcome is difficult to predict because of the
ability of protective factors to modify the negative effects of risk
(Conners, 2003). Certainly, access to high quality health care, adequate
family resources to access care, and parent investment in the child all
ameliorate the negative impact of ADHD.
What Exactly is the Problem in ADHD?
Researchers characterize ADHD as a developmentally sensitive disorder
characterized by a delay in maturation of the brain's ability to achieve
mastery of self-regulation (Hunt, et al., 2001). The three hallmark
impairments of ADHD are inattentiveness/distractibility, hyperactivity, and
impulsivity (American Psychiatric Association, 1994). Individual children
vary in the degree to which each impairment presents.
The behaviors peers and adults perceive as troublesome are the result of
actual physiologic differences in brain functions related to learning,
particularly in regard to filtering stimuli and selecting relevant
information to which to attend, shifting and sustaining attention, as well
as linking new and old information, known as working memory (Castellanos,
1997). Not only do children with ADHD have difficulty inhibiting attending
to any and every stimulus and controlling inappropriate motor behavior, they
also have difficulty modulating their feelings (Hunt, et al., 2001). Hence,
they are also vulnerable to mood disorders as well as the social and
academic problems of ADHD (Pliszka, 1998). At the heart of the problematic
behaviors are deficits in the quantity and function of neurotransmitters,
substances produced in the final stage of neuronal development and
differentiation (Gualtieri, 1991).
Neurotransmitters and the receptors with which they interact serve both to
actively transmit information as well as to selectively repress transmission
of information and motor behaviors that would hinder attention and learning
(Castellanos, 1997). Children with ADHD appear to lack adequate
norepinephrine with which to initiate arousal and to exhaust their dopamine
supplies, which help to sustain attention and filter irrelevant stimuli for
the current mental task (Hunt, et al., 2001).
Do Children Outgrow ADHD?
Researchers find that the behaviors associated with ADHD do change as the
child grows older (Biederman, 1998). For example, dopamine levels that help
drive the need for exploration peaks at two years of age in normal children,
which is developmentally helpful since very young children lay a strong
foundation for learning through active exploration (Castellanos, 1997).
Dopamine levels decline thereafter, allowing the child to begin the equally
important tasks of learning to attend for longer periods of time and to fit
into social expectations by bringing their behavior under voluntary and
inhibitory control (Biederman, 1998).
A similar process also occurs for children with ADHD, but with a two-year or
more delay. Thus, hyperactivity decreases in as many as 50% of children with
ADHD as they grow older. However, there is no developmental improvement in
attention deficit noted for either boys or girls (Baren, 2002). About 80% of
children continue to exhibit symptoms in adolescence, and 85% or more have
functional impairments as adults (Barkley, Fisher, Edelrock, & Smallish,
1990).
Is ADHD a Problem That Really Needs Treatment?
The majority of researchers and specialists in the care of children with
ADHD spectrum disorders strongly recommend treatment for children with these
disorders because they consistently result in social and academic failure
(Arnold, et al., 1997). Most children experience at least a 2-year delay in
social development and at least a 2-3 year delay in cognitive development.
One quarter of all affected children also have learning disabilities in
reading, written or spoken language, and math. Many have more than one
learning disability (Selekman & Snyder, 2000).
Other mood and behavior disorders also co-exist with the ADHD spectrum.
Compared to children without ADHD, children with the diagnosis are more
likely to suffer from depression (18%), anxiety (26%), oppositional-defiant
disorder (35%), conduct disorder (26%), and significant tics (Pliszka,
1998). About 52% of adolescents with ADHD engage in substance abuse and
criminal behavior, 15% in antisocial behavior (Baren, 2002). They are at
greater risk as well for MVAs (Baren, 2002). Children with ADHD, who are
aggressive or also diagnosed with conduct disorder, are at especially high
risk for substance abuse (Hunt, et al., 2001). Consequently, it is best to
support children with this diagnosis through their delays in CNS maturation
with a treatment plan that includes medication, behavior modification, and
cognitive assistance (Arnold, et al., 1997).
How is ADHD Diagnosed?
There is no lab or imaging test, nor is there a battery of psychological
tests, that reliably diagnose ADHD (Leslie, 2002). Rather, the diagnosis
rests mainly on history and ruling out other sources for the troublesome
behaviors.
There are many causes of inattentive, impulsive, and hyperactive behavior
that need to be considered during each child's evaluation (Selekman &
Snyder, 2000). In particular, vision and hearing deficits often lead to
behavior that suggests inattention and hyperactivity (Leslie, 2002). If the
child is unable to hear directions or to see the blackboard or print in
books, they cannot follow what they didn't hear, nor can they respond to
things they haven't seen. Vision and hearing assessments are integral first
steps in evaluating for ADHD.
Other problems may lie in a mismatch between the child's behavioral style
and the characteristics and skill level of a particular teacher (Hinshaw,
1992). Clinicians assess for this by looking for cross-setting display of
symptoms in reports from reliable informants (Leslie, 2002). If they occur
in only one setting, the chances are great that something about the
environment or adults in that situation elicits the undesirable behaviors in
the child.
Clinicians also need to explore the quality and stability of the home
environment, the appropriateness of developmental expectations of the child,
and the caregiving skills and commitment of the parents (Murphy & Barkley,
1996). Stress in the home from financial sources, conflict between parents,
recent or frequent moves all affect child behavior for the worse. As women
delay childbearing, the likelihood of unrealistic expectations for child
behavior may increase for partners used to their independent, orderly,
career-focused lifestyle (Woodrich, 2000). Even parents who truly want
children may underestimate the challenges growing, changing children present
to them. Consequently, the initial appointment in primary care should
explore these issues as well as provide for a thorough medical history and
physical exam.
Making the Diagnosis
The DSM IV criteria for ADHD establishes that a child must display 6 out of
9 possible symptoms of inattention or 6 of 9 symptoms of
hyperactivity/impulsivity in order to establish the diagnosis (American
Psychiatric Association, 1994). In addition, the child must have had
symptoms before the age of 7, they must occur in more than one setting, and
there must be clear evidence of significant functional impairment in social,
academic, or occupational functioning. The symptoms must not coincide with
Pervasive Developmental Disorder (PDD) or a psychotic disorder, or be more
appropriately diagnosed as a mood disorder. Most clinicians are hesitant to
make the diagnosis of ADHD prior to 6 years of age because of the wide
variability in levels of activity that are considered normal in early
childhood but that overlap with the symptoms of ADHD.
The history should include a review of the prenatal, intrapartal, and
newborn histories for known risk factors (Selekman & Snyder, 2000). The
clinician should also review and refine the family history to identify any
genetic and behavioral risk factors. A strong social history should identify
sources of stress and support in the home. Gaining a sense of the
organizational supports the child receives at home is also an important
facet of the social history. Is there a schedule for meals and bedtime? How
does the parent help the child to transition from one task to another?
The emphases of the physical exam include careful evaluation for the
stigmata of inherited disorders, a thorough neurological exam, and
developmental assessment (Leslie, 2002). Often minor anomalies that had been
dismissed as insignificant lead to consideration of inheritable disorders
marked by behavioral disabilities. Chromosomal testing may be indicated.
Thorough evaluations also solicit information from parents, teachers,
coaches, and other adults with whom the child spends a significant amount of
time. Standardized screening instruments such as the Conners' Parent and
Teacher Rating Scales or Vanderbilt ADHD Diagnostic Parent and Teacher
Scales help to not only verify the presence of genuine impairments but also
to track the child's progress during treatment (Stein, 2002).
What About Other Problems?
No evaluation for ADHD is complete until the existence of co-morbidities
receives careful consideration (Pliszka, 1998). A strong family history of
depression, anxiety, criminal behavior, or substance abuse should prompt
evaluation for psychiatric co-morbidities (Murphy & Barkley, 1996). This may
be beyond the scope of the primary care professional and require referral to
psychiatric specialists (Leslie, 2002). Discovery of developmental delays or
neurological abnormalities during the physical exam demand referral to a
neurologist. Psychological evaluation for learning disabilities is necessary
if there are academic difficulties (Hunt, et al. 2001).
Is Medication More Effective Than Other Therapies?
In 1999, a large, randomized clinical trial of three therapeutic regimens
reported in the Archives of General Psychiatry showed that medication alone
was as effective as behavior modification or counseling alone. However, the
best outcomes were achieved with a combination of therapies, with
medication, counseling, and behavior modification combined. A valuable
lesson learned from this clinical trial was the efficacy of medication plans
that covered 12 hours of each child's day, not just the 6-8 hours usually
prescribed by non-specialized physicians in the community.
Helping Parents Accept Medications in the Treatment Plan
Medication is the aspect of the treatment plan that is most scary for
parents, so much so that they often resist and delay use of medication.
Clinicians can minimize resistance by sharing information in a clear and
supportive way about the negative consequences of not treating ADHD
disorders effectively, as well as honest information on the safety profile
of the growing number of medications and their formulations from which they
have to select (Stein, 2002).
It is also helpful to explain the four classes of medications most often
used in treatment and to explain that the drugs within each class are not
all the same (see Stimulant Management Chart located at
www.nichq.org/resources/toolkit/). Therefore, it will most likely take time
to identify the best medication, and then the best dose, that helps the
child without causing undesirable side effects (Stein, 2002). Parents often
find it reassuring if the clinician carefully adjusts the medication in
small increments and lets the parent know that this is the approach that
will be used. If there is information from the history and behavioral
profile of the child that suggests one medication over another, it is best
to share that information, particularly if undesirable side effects are more
likely.
Because of co-morbidities, many children require treatment with more than
one drug. The best treatment plan is to minimize polypharmacy as much as
possible while achieving good functional outcomes for the child (Hunt, et
al., 2001). The Table lists frequently used classes of medications exemplars
and specific information about their best use.
Other Treatment Plan Elements
Behavior modification strategies often help the child gain control over
annoying aspects of their behavior and to master everyday routines through
organizational strategies (Stein, 2002). Reward systems for desirable
behavior are also effective. There are an abundance of possibilities and
resources on the Internet that parents and children can choose from in order
to reach success (see the handout ADHD Resources Available on the Internet
located at www.nichq.org/resources/toolkit/). The website www.chadd.org has
all of its informational materials also available in Spanish.
Tutoring may also be necessary to help a child achieve academic success, as
well as structured study schedules (Stein, 2002). Supplemental doses of
medication or the use of extended release preparations often help students
do their homework effectively.
Behavioral problems may also leave a legacy of low self-esteem for the child
and a high level of stress for the parent (Selekman & Snyder, 2000). Therapy
as individuals and a family may help parents and children to renew their
bonds of affection and their stores of patience and commitment for the
long-term treatment of ADHD. Sleep initiation and maintenance problems often
leave both the child and the parents at a coping deficit (Hunt, et al.,
2001). In addition, care should be taken to assure a regular bedtime routine
and to adjust medication to minimize negative effects on sleep (Selekman &
Snyder, 2000).
No discussion of treatment would be complete without acknowledging the
plethora of herbal, dietary, and alternative treatments parents may try,
often in the hope that they will be safer alternatives to mainstream
medications (Chan, Gardiner, & Kemper, 2000). To date, none of these
alternatives have received testing in randomized clinical trials that have
demonstrated their efficacy in children with ADHD, although several are
considered safe by the FDA such as valerian and lemon balm.
Primary care professionals need to hold a frank discussion of treatments,
especially herbal and dietary supplements that they may already be using or
plan to use in conjunction with traditional therapies. A recent survey
showed that 64% of 381 parents of children with ADHD had tried or were
currently using dietary and herbal remedies (Stubberfield & Parry, 1999).
This is critical in order to ensure avoidance of drug interactions that are
dangerous to the child (Fugh-Berman & Cott, 1999). This also provides the
opportunity to identify safe informational resources to parents while
conveying respect for the parents' desire to help their child.
Follow-Up and Conclusion
Follow-Up
No discussion of expectations for care is complete without a clear schedule
for regular evaluation of the effectiveness of the treatment as it is
initiated (Leslie, 2002). This may involve phone contact between the health
professional and parent every three or four days, especially as new
medications or dosages of medication are trialed. Once an effective
medication regimen and behavior modification program are in place, children
require at least one health visit every six months for evaluation and
potential modification of the treatment plan (Selekman & Snyder, 2000).
Health professionals should also track the acceptability and effectiveness
of other therapies implemented, such as counseling and tutoring. Parents may
need assistance to identify their ineffectiveness and support to find
alternate providers.
Conclusion
The National Institute for Child Health Care Quality (NICHQ) web site
(www.nichq.org) offers health professionals seventeen tools to assist in
making the diagnosis of ADHD, structuring and documenting an effective
treatment plan, and assisting parents with behavior modification strategies.
In addition, the American Academy of Pediatrics (2001) has published
guidelines for the diagnosis, evaluation, and treatment of school-age
children for ADHD. Together, these resources provide a solid foundation for
structuring effective services for at-risk children and their families.
Tables
Table. Medications Frequently Used in the Management of ADHD and Its Co-morbidities
References
Adesman, A. R. (2002). New medications for treatment of children with
attention-deficit/hyperactivity disorder: review and commentary. Pediatric
Annals, 31, 514-522.
American Academy of Pediatrics. (2001). Clinical practice guideline:
Treatment of the school-age child with attention-deficit/hyperactivity
disorder. Pediatrics, 108(4), 1033-1044.
American Psychiatric Association (1994). Diagnostic and statistical manual
of mental disorders (pp. 78-85)(4th ed.). Washington, DC: American
Psychiatric Association.
Arnold, L. E., Abikoff, H. B., Cantwell, D. P., et al. (1997). NIMH
Collaborative multimodal treatment study of children with ADHD (the MTA):
Design challenges and choice. Archives of General Psychiatry, 54, 865-870.
Baren, M. (2002). ADHD in adolescents: Will you know it when you see it?
Contemporary Pediatrics, 19(5), 124-143.
Barkley, R. (1998). Attention-deficit hyperactivity disorder: A handbook for
diagnosis and treatment. New York: Guilford.
Barkley, R. A., Fischer, M., Edelrock, C. S., & Smallish, L. (1990). The
adolescent outcome of hyperactive children diagnosed by research criteria:
I. An 8-year prospective follow-up study. Journal of the American Academy of
Child and Adolescent Psychiatry, 29, 546-557.
Biederman, J. (1998). Attention-deficit/hyperactivity disorder: A lifespan
perspective. Journal of Clinical Psychiatry, 59,(Suppl 7), 4-16.
Biederman, J., Faraone, S. V., Keenan, K., et al. (1990). Family genetic and
psychosocial risk factors in DSM-III attention deficit disorder. Journal of
the American Academy of Child and Adolescent Psychiatry, 29, 526-533.
Biederman, J., Faraone, S. V., Taylor, A., et al. (1998). Diagnostic
continuity between child and adolescent ADHD: Findings from a longitudinal
clinical sample. Journal of the American Academy of Child and Adolescent
Psychiatry, 37(3), 305-313.
Biederman, J., Wilens, T., Mick E., et al. (1997). Is ADHD a risk factor for
psychoactive substance use disorders? Findings from a four-year prospective
follow-up study. Journal of the American Academy of Child and Adolescent
Psychiatry, 36(3), 21-29.
Castellanos, F. X. (1997). Toward a pathophysiology of
attention-deficit/hyperactivity disorder. Clinical Pediatrics, 36(7),
381-393.
Chan, E., Gardiner, P., & Kemper, K. K. (2000). "At least it's natural:"
Herbs and dietary supplements in ADHD. Contemporary Pediatrics, 17(9),
116-130.
Conners, C. K. (2003). Functional impairments in ADHD: The therapeutic
target. Contemporary Pediatrics, Suppl 1, 4-6.
Fugh-Berman, A., & Cott, J. M. (1999). Dietary supplements and natural
products as psychotherapeutic agents. Psychosomatic Medicine, 61, 712-728.
Gaub, M., & Carlson, C. L. (1997). Gender differences in ADHD: A
meta-analysis and critical review. Journal of the American Academy of Child
and Adolescent Psychiatry, 36, 1036-1045.
Gaultieri, C. T. (1991). The functional neuroanatomy of psychiatric
treatments. Psychiatric Clinics of North America, 14, 113-124.
Gunnar, M. R., & Barr, R. G. (1998). Stress, early brain development, and
behavior. Infants and Young Children, 11(1), 1-14.
Hannah, J. N. (2002). The role of schools in attention-deficit/hyperactivity
disorder. Pediatric Annals, 31, 507-513.
Hinshaw, S. P. (1992). Intervention for social skill and social competence.
Child and Adolescent Psychiatric Clinics of North America, 1, 539-552.
Hunt, R. D., Paquin, A., & Payton, K. (2001). An update on assessment and
treatment of complex attention-deficit hyperactivity disorder. Pediatric
Annals, 30(3), 162-172.
Jacobvitz, D., & Sroufe, L. A. (1987). The early caregiver-child
relationship and attention deficit with hyperactivity disorder in
kindergarten: A prospective study. Child Development, 58, 1496-1504.
Leslie, L. K. (2002). The role of primary care physicians in
attention-deficit/hyperactivity disorder. Pediatric Annals, 31, 475-484.
Murphy, K. R., & Barkley, R. A. (1996). Parents of children with
attention-deficit/hyperactivity disorder: Psychological and attentional
impairment. American Journal of Orthopsychiatry, 66, 93-102.
Pliszka, S. R. (1998). Co-morbidity with attention-deficit hyperactivity
disorder: An overview. Journal of Clinical Psychiatry, 59(Suppl 7), S50-S58.
Saigal, S. (2000). Perception of health status and quality of life of
extremely low-birth weight survivors. Clinics in Perinatology, 27(2),
403-419.
Selekman, J., & Snyder, M. (2000). Learning disabilities and/or attention
deficit hyperactivity disorder. In P. L. Jackson & J. A. Vessey (Eds.),
Primary care of the child with a chronic condition (3rd ed.) (pp. 631-657).
St. Louis: Mosby.
Seubert, D. E., Stetzer, B. P., Wolfe, H. M., & Treadwell, M. C. (1999).
Delivery of the marginally preterm infant: What are the minor morbidities?
American Journal of Obstetrics and Gynecology, 181, 1087-1091.
Stein, M. T. (2002). The role of attention-deficit/hyperactivity disorder
diagnostic and treatment guidelines in changing physician practices.
Pediatric Annals, 31, 496-504.
Stubberfield, T., & Parry, T. (1999). Utilization of alternative therapies
in attention-deficit hyperactivity disorder. Journal of Paediatric Health,
35, 450-453.
The MTA Cooperative Group: A 14-month randomized clinical trial of treatment
strategies for attention-deficit/hyperactivity disorder. Archives of General
Psychiatry, 56, 1073-1093.
Woodrich, D. L. (2000). Attention-deficit hyperactivity disorder: What every
parent wants to know (2nd ed.). Baltimore: Paul H. Brooks.
Reprint Address
Reprint requests: Mary Margaret Gottesman, PhD, RN, CPNP, 1585 Neil Avenue,
Columbus, OH 43210-1289
Mary Margaret Gottesman, PhD, RN, CPNP, Ohio State University College of
Nursing, Columbus, Ohio
