Introduction

Attention-deficit/hyperactivity disorder (ADHD) is one of the most frequently diagnosed psychiatric disorders in children. Extensive research in many different populations has found many significant risks associated with the syndrome. The rates of difficulties, such as low educational level, substance abuse, and criminal behavior are high in this population and their effects may persist into adulthood.[1,2] Fortunately, a wide array of drugs are available to effectively treat the disorder.[3,4] Furthermore, intensive media coverage has increased the public's awareness about this disorder. Despite these positive factors, the rate of effective diagnosis and treatment of ADHD remains suboptimal. Regina Bussing, MD,[5] from the University of Florida, Gainesville, has been investigating the multiple barriers impeding the proper treatment of ADHD.Inequality of Service Delivery

In addition to problems in the diagnosis and treatment of ADHD, there is evidence that there are inequalities in the administration of services. It would be expected that the services for males would be greater than females considering the 2:1 male to female prevalence. However, there is evidence that ADHD is underdiagnosed in girls at a rate well above this difference in prevalence rates. In a recent study, Bussing and colleagues[6] screened children in the second through fourth grades who were enrolled in a special education program. Only half of the children diagnosed with ADHD were receiving treatment, and it was estimated that the girls were underserved at a rate 3 times higher than that for boys. Most of the children were receiving treatment from pediatricians. There is some evidence that black children with ADHD are not given appropriate levels of attention compared with that received by white children.[7] Zito and colleagues[7] looked at Medicaid prescription patterns in Maryland for youths aged 5-14 years. The rate of prescriptions for black children was half that of white children. The disparity was greatest for the stimulant medications, with black:white prescription ratios ranging from 1:2 to 1:2.5, depending on geographic location. There is no evidence, however, that the prevalence of ADHD is higher among white children. Bussing and colleagues[7] also found that service delivery to blacks was deficient; other predictors of unmet service needs in this study included lower income and HMO coverage.Other researchers have not confirmed racial discrepancies, however. Kelleher and colleagues[8] found that among a sample of 14,910 children aged 4-15 years in 44 states, only 57% of psychiatric disorders were correctly identified. In contrast to the Medicaid prescription data, there was no variation in identification rates between black and white children. Similarly, Wasserman and colleagues[9] found no racial discrepancy in the incidence of symptoms of attention and hyperactivity in a primary care practice.Steps to Effective Treatment

Presented below is a multistep process that takes place before the child is actually referred for treatment, and the treatment process may break down at any step along the way. 1. Display of problematic behavior. 2. Recognition of the behavior as problematic. The threshold for recognition of the problem varies widely. Factors such as cultural acceptance of the behaviors and parental perceptions and tolerance strongly influence the threshold for referral. The clinical presentation of the child also influences the tendency to identify a behavior as problematic. Hyperactivity, for example, tends to be more commonly seen in boys with ADHD than girls with ADHD.[10] Since hyperactivity is difficult to deal with in a social setting, it is more likely to be identified as abnormal.3. Decision to seek an evaluation. A caregiver may decide that the problem is not of sufficient severity to warrant clinical interventions. Other barriers at this step are problems, such as, difficulty finding transportation, payment or insurance difficulties, or perceptions about the worthiness of the treatment, that may play a significant role in forestalling the treatment process.4. Correct diagnosis of the ADHD syndrome. This step is dependent on clinician skill and familiarity with the diagnostic syndrome. Most children with ADHD are treated by primary care physicians and neurologists[11] and the diagnostic acumen of nonpsychiatrists varies widely. 5. Initiation of treatment. Although the correct diagnosis may be made, the family might object to the treatment recommendations. For example, there may be resistance to the use of medications. Other factors, such as problems in the therapeutic relationship or cultural differences, may also factor into treatment acceptance.A Study of Barriers to Help-Seeking and Treatment for ADHD

Bussing[5] discussed her current study that focuses on the identification of the steps along the path to treatment that are most likely to result in an inadequate treatment course. The areas examined most closely included the effect of gender and race on the referral process as well as the delineation of barriers to treatment identified by parents.MethodsThe study targeted public school children in kindergarten to fifth grade. Children with autism or mental retardation were excluded. In order to identify children at high risk for ADHD, a random phone survey of 1615 parents was conducted; 79% cooperated. Ninety-six percent of the participating families allowed for the teacher to be questioned. The average age of children was 7.8 years. Whites made up 69% of the sample and blacks comprised 31%. Since the rate of ADHD is higher among boys, a larger number of girls (67% of the screening sample) was screened to equalize the high-risk samples subsequently chosen from the screened group. Children were considered at high risk if either parent or school official recognized that something was wrong on a variety of scales.Three hundred eighty-nine high-risk children were identified. The number of boys (52%) was approximately equal to the number of girls (48%). About one fourth of the sample was receiving special education services. There were 91 children who met criteria for ADHD yet were untreated for this disorder. These children fell into the "unmet needs" category. ResultsDespite the concerns that "something might be wrong" by either parent or teacher, only 57% of boys and 20% of girls had been referred for evaluation. Of the entire sample with ADHD, the rates of accurate diagnosis were 47% for boys and 15% for girls. The rates of ongoing treatment were 35% for boys and a mere 9% for girls. With respect to race, 28% of the high-risk black children had been evaluated compared with 51% of white children; rates of diagnosis were 20% for blacks and 44% for whites. The eventual treatment rates were 15% for black children and 31% for white children. A multivariate analysis assessed the extent to which each factor contributed to the referral and treatment process. Despite the fact that both boys and girls had approximately an equally high number of symptoms, boys were nearly 6 times as likely to be referred for the evaluation (odds ratio [OR], 5.8). Children with regular pediatric care were much more likely to be referred for evaluation (OR, 6.9). White children were nearly 3 times as likely to be referred for evaluation as were black children. When a summary score of the parents' overall knowledge was included in the variables, however, the differences for ethnicity were no longer present; the gender differences remained however. The parents who did not seek out treatment for their child were administered a questionnaire assessing for the presence and nature of barriers to treatment. Twenty barriers were identified and the average number of barriers endorsed was 4.1. The barriers were grouped as follows:
Lack of perceived need (66% of respondents). Included were statements such as "My child just got better by herself" or "My child solved his own problems."
System barriers (53% of respondents). Included were difficulties such as lack of suitable services, inconvenient location, or language barriers.
Negative expectations (45% of respondents). Concerns were voiced that the child would be taken away or that treatment would not help. Black parents endorsed these items more frequently compared with white parents (58% vs 34%).
Stigma (39% of the respondents). Included were concerns by the patient or family about what others might think. There was significantly more concern among parents of girls (52%) vs boys (30%).
Financial (39% of the respondents). Expressed concerns about the cost of treatment, which includes the length or number of visits, cost of medications, and the issues of reimbursement by insurance companies.Use of Focus GroupsFocus groups were formed to allow parents to discuss their concerns in a group setting. The use of these groups has been previously described in Bussing and Gary (2001).[12] There was a general and consistent concern about the use of medications, especially stimulant medications such as Ritalin (methylphenidate). There were also concerns about the ability to get adequate testing, obtain test results, and the general lack of communication, although these concerns were more common among whites. Blacks were more likely to cite a lack of trust in the mental health system and transportation problems. Parents often explained away girls' behaviors as a phase. They were sometimes described as "tomboys," and it was thought that they would grow out of this behavior with time. When ADHD was present in a brother and a sister, it was not uncommon for the son to get more attention concerning the behaviors.ConclusionsBussing and colleagues concluded:
There are significantly greater barriers for girls, blacks, and poorer individuals at multiple levels, including obtaining evaluations by parents, making the diagnosis by the provider, and obtaining treatment.
The parental decision to seek professional help is the greatest barrier to treatment
For girls, parental and provider stereotypes of "normal" behavior or comparisons with male siblings may constitute a significant barrier.
Lower overall parental knowledge concerning ADHD among black parents may play an important role in delaying or avoiding diagnosis and treatment. Educational initiatives are needed to improve overall detection and treatment rates for ADHD. Although there are deficiencies in the treatment process for all children, the results of this study indicate that particular attention must be paid to gender and cultural differences. These educational programs need to be directed toward parents, school officials, and clinicians and physicians in order to most effectively implement more constructive treatment initiatives.References
Faraone SV, Biederman J, Spencer T, Wilens T, Seidman LJ, Mick E, Doyle AE.Attention-deficit/hyperactivity disorder in adults: an overview. Biol Psychiatry. 2000;48:9-20.
Rasmussen P, Gillberg C. Natural outcome of ADHD with developmental coordination disorder at age 22 years: a controlled, longitudinal, community-based study. Am Acad Child Adolesc Psychiatry. 2000;39:1424-1431.
Spencer T, Biederman J, Wilens T, et al. Efficacy of a mixed amphetamine salts compound in adults with attention-deficit/hyperactivity disorder. Arch Gen Psychiatry. 2001;58:775-782.
Wilens TE, Spencer TJ, Biederman J, et al. A controlled clinical trial of bupropion for attention deficit hyperactivity disorder in adults. Am J Psychiatry. 2001;158:282-288.
Bussing R. Barriers to help-seeking and treatment for ADHD. Program and abstracts of the American Psychiatric Association 53rd Institute on Psychiatric Services; October 10-14, 2001; Orlando, Florida. Lecture 13.
Bussing R, Zima BT, Perwien AR, Belin TR, Widawski M. Children in special education programs: attention deficit hyperactivity disorder, use of services, and unmet needs. Am J Public Health. 1998;88:880-886.
Zito JM, Safer DJ, dosReis S, Riddle MA. Racial disparity in psychotropic medications prescribed for youths with Medicaid insurance in Maryland. J Am Acad Child Adolesc Psychiatry. 1998;37:179-184.
Kelleher KJ, Moore CD, Childs GE, et al. Patient race and ethnicity in primary care management of child behavior problems: a report from PROS and ASPN. Pediatric research in office settings. Ambulatory Sentinel Practice Network. Med Care.1999;37:1092-1104.
Wasserman RC, Kelleher KJ, Bocian A, et al. Identification of attentional and hyperactivity problems in primary care: a report from pediatric research in office settings and the ambulatory sentinel practice network. Pediatrics. 1999;103:E38.
Gaub M, Carlson CL. Gender differences in ADHD: a meta-analysis and critical review. J Am Acad Child Adolesc Psychiatry. 1997;36:1783.
Zarin DA, Suarez AP, Pincus HA, Kupersanin E, Zito JM. Clinical and treatment characteristics of children with attention-deficit/hyperactivity disorder in psychiatric practice. J Am Acad Child Adolesc Psychiatry. 1998;37:1262-1270.
Bussing R, Gary FA. Practice guidelines and parental ADHD treatment evaluations: friends or foes? Harv Rev Psychiatry. 2001;9:223-233.