Two hundred thirty-five children were initially referred to the SANDAP AC from the practices. Of that group, 16 children were ineligible for the study because of their ages (<4 years) or because they were already receiving psychotropic medication. Ten families moved immediately after their initial referrals and were not included in the study. Seven parents refused to allow their children to participate in the study. An additional 43 did not return packets, and those children were not included in the current study. This left a remaining sample size of 159 children.
The mean age of the sample was 8.2 years (median: 7.0 years; SD: 2.7 years). Seventy-five percent of the children were male. With respect to race/ethnicity, 68.6% were white American, 3.1% were African American, 20.1% were Hispanic American, and 8.2% were reported as other (primarily biracial).
The results regarding parent- and teacher-reported ADHD symptoms are presented in . Using the restrictive diagnostic parameters described above, 11.5% of children had symptoms that met the criteria for the ADHD-inattentive subtype, 0.0% for the ADHD-hyperactive subtype, and 31.8% for the combined subtype. Interestingly, 40.8% of children had discrepant responses from parents and teachers, with only the parent or teacher endorsing sufficient numbers of symptoms of ADHD to meet the DSM-IV criteria. Another 15.9% of children did not have patterns of symptoms that met the criteria for ADHD on either the parent or teacher forms.
Proportions of Children Presenting With Common Comorbidities, According to ADHD Subtype
With respect to coexisting conditions, presents results for several commonly coexisting conditions screened for on the Vanderbilt scales, including ODD/CD and anxiety/depression. Of the total SANDAP sample, 58.5% of the children met the screening criteria for ODD/CD on either the parent or teacher Vanderbilt forms. We were unable to differentiate the children who met the screening criteria for ODD on the Vanderbilt scales from those who met the criteria for CD, because the Vanderbilt scales combine ODD and CD symptoms on the teacher form. A smaller proportion (32.7%) met the screening criteria for anxiety/depression, according to either parent or teacher reports. The assessment instrument also screened for suicidality; on a 4-point Likert scale, 11.4% of parents and/or teachers responded that the child had commented often or very often that “I wish I were dead.” In terms of school issues, 98.0% of the total sample had school problems endorsed by the parent and/or teacher. Another 32.1% received special education services or had participated in an individualized education program in the past.
Feasibility of the SANDAP Process
Feasibility of the protocol was measured from an administrative perspective and from the perspective of stakeholders (PCPs, office staff members, families, and teachers). Administratively, the cost of the packet (in terms of paper copies) was $1.50. The cost of the AC’s time included an average of 41 minutes to score each packet (median: 35 minutes; SD: 16 minutes) and an average of 20 minutes of tracking time (median: 15 minutes; SD: 18 minutes) per child, to contact parents and/or teachers to prompt them to return their portions of the packet. Referrals during the research period averaged 0.43 referrals per physician per month (range: 0–3 referrals per physician per month), with peak months being October through December and February through June. These findings suggest that a trained, full-time AC could complete ~35 assessment packets per week.
Feasibility from the perspective of PCPs and staff members was assessed in the semistructured debriefing sessions. PCPs and office staff members reported that the protocol was not difficult to implement in the office setting. Office staff members noted that it was important to designate specific staff members to communicate with the AC, to ensure consistent care. Office staff members highlighted their critical role in identifying families to receive a packet, providing referral information to the AC, letting the AC know when the supplies of packets and educational handouts were getting low, and ensuring that children received follow-up appointments when the packet was completed. PCPs stated that there was a definite need for a designated staff person such as the AC to collect and collate information from parents and teachers and that the identification packet substantially saved PCP and office staff time and provided a more complete understanding of patients.
Parents commented that it required an average of 59.2 minutes to complete the packet (median: 40.0 minutes; SD: 55.3 minutes), and 81.7% thought that the forms were “easy/very easy” to complete. Almost 90% of parents considered it worth their effort to complete the packet. In open-ended comments, parents expressed satisfaction with the amount of material collected in the packet; 1 parent commented that the doctor was “taking seriously” her child’s condition.
Teacher surveys were completed for 116 children (75%). Teachers found that it required an average of 48 minutes to complete the packet (median: 45 minutes; SD: 34.2 minutes), and 60.9% thought that the forms were “easy/very easy” to complete. More than 95% considered it worth their time and effort to complete the packet.
Additional barriers were elicited from physicians and office staff members during the quarterly debriefing sessions. Common themes included 1) limited information in the AAP guidelines regarding the diagnostic process, 2) challenges of “opening a Pandora’s box” in the diagnostic process, with respect to coexisting conditions, 3) difficulty implementing treatment in the primary care setting, 4) issues inherent in collaboration with schools, 5) lack of time, and 6) problems accessing mental health services, such as behavioral therapy, particularly for offices not in an integrated delivery system.
The first theme addressed limited information regarding the diagnostic process in the AAP guidelines. PCPs requested more specific details regarding 1) the strengths and weaknesses of available ADHD rating scales, 2) assessment and management of coexisting conditions, and 3) indications for a psychoeducational evaluation. PCPs also requested guidance regarding diagnostic and management strategies for the 41% of the sample with discrepant results between parents and teachers.
The second theme involved varying interest displayed by the PCP participants regarding psychosocial issues and personal willingness to open a Pandora’s box. The presence of coexisting mental health and/or educational conditions and the lack of clarity concerning referral pathways for evaluation and treatment of these conditions compounded the initial reluctance of some PCPs to care for children with ADHD. Some adopted a utilitarian approach to screening for coexisting mental health and learning problems, stating, “I don’t want something identified if I don’t have the resources to do something about it,” thus highlighting the importance of clear referral paths for PCPs caring for children with ADHD.
The third theme for some of the PCPs was difficulty in providing treatment in the primary care setting. For some PCPs, this was a function of limited knowledge regarding medication treatment (specifically, titration of stimulant medications). Others cited productivity pressures that subtly reinforced the use of fewer follow-up visits. In addition, others described inequities in workloads for providers who wrote stimulant prescriptions, because California requires the use of triplicate prescriptions for stimulant medications.
The fourth theme concerned the difficulties inherent in working collaboratively with schools regarding both diagnosis and treatment. With respect to the diagnostic process, determining when and how to request from the school evaluations of possible learning disabilities was particularly challenging. Many PCPs voiced discomfort regarding establishing a diagnosis of ADHD without a complete psychoeducational evaluation but were also concerned about overwhelming school staff. With respect to treatment, PCPs discussed problems with obtaining information from schools regarding the effects of treatment.
The fifth theme addressed the difficulties of evaluating a child for ADHD in an acute care setting modeled on 7- to 15-minute visits. PCPs discussed less obvious time requirements, in addition to making the diagnosis and providing medication, including a family’s need for time to process a diagnosis and their requests for information and education regarding available treatments. PCPs were, for the most part, unaware of community groups that might be able to partner with offices to provide such information to families. PCPs varied in their opinions regarding extending the time for visits; some developed strategies for managing longer visits by scheduling families at the end of the day after “regular hours,” and others split a 1-hour visit into several shorter consecutive visits. Others were unable to make these types of changes within the structure and reimbursement system of their health care facilities.
The last theme addressed the fragmentation between health and mental health care systems in the San Diego region and the lack of clarity regarding referral paths. PCPs stressed that the “carving out” of mental health services, whereby mental health services were contracted to a separate fiscal institution, negatively affected their ability to access quality mental health services from a provider they knew and trusted. Several referred patients to neurology services instead of mental health services because of the ease of utilization review within the physical health plan, compared with accessing carved-out mental health services. One commented on the impersonal quality of a toll-free line for both providers and clients to use to access services. PCPs also wanted clear information regarding who in the community provided behavioral treatment. These issues of fragmentation were salient in both the community clinics and the independent practice association offices but not in the office in the integrated delivery system; the integrated delivery system had a defined panel of mental health providers and had even developed a program for parents of children with ADHD that was being coordinated by social workers.
Themes from parents paralleled many of the themes generated by the offices. Open-ended parental comments from the telephone interviews indicated the need for 1) more information regarding ADHD, the results of the child’s evaluation, medication and why it might be prescribed, and other available treatments (52%), 2) counseling (35.8%) or support groups (25.8%) that could help family members better cope with the disorder, 3) child-focused programming to help the child cope with ADHD (17.0%), and 4) help in working with the child’s school to access help with behavioral strategies, homework planning, and medication (13.2%).