ADHD: The need for system change

Attention deficit hyperactivity disorder (ADHD) is now a mainstream paediatric condition, the primary diagnosis in 26% of all Australian general paediatric consultations.1 It is one of the most highly researched conditions in paediatrics. We know a great deal about its causes, associations, treatment and outcomes. Cognitive neuroscience research has shown that disordered fronto-striato-cerebellar circuitry underpins the executive function deficits at the core of this condition.2 Although several candidate polymorphisms in genes related to neurotransmitter function have generated interest, these findings have been difficult to confirm.3 Other aetiological factors that have been implicated include prenatal exposures (particularly nicotine),4 excessive television watching during the early years,5 early deprivation6 and iron deficiency.7 Longitudinal magnetic resonance imaging (MRI) work has shed light on the stability of volumetric brain changes in response to early influences.8 We are learning more about the complex relationships between ADHD behaviours and sleep,9 the effects on family functioning,10 and the persistence of the condition across the lifespan.11 With regard to treatment, we now have a clearer understanding of the primary position of stimulant medication for reducing core ADHD symptoms, and which outcomes can be expected to be influenced by the addition of intensive behavioural therapy.12 A string of guidelines, consensus statements and review articles have been published recently, each outlining similar principles and elements of best practice in the diagnosis and management of ADHD.13–19, 20 So, where should we (clinicians/researchers/child advocates) now be investing our energies? Given what we know, how can we work to achieve better outcomes for children with ADHD? The article by Concannon and Yang in this edition indicates some direction.20 This is a large nested cohort study of 278 children with ADHD, identified as part of a community survey of 11 184 children aged 10–12 in northern Sydney. The response rates of 77% of eligible schools, and 65% of parents of eligible children in grades 5 and 6, are reasonable and so the data can be assumed to be representative of this population. The prevalence of 4% for diagnosed ADHD in this sample is within the range expected. The main findings are not surprising: less than half had had behavioural interventions, more than 70% had used complementary therapies, and parents with children taking medication or having regular paediatric review were more likely to be satisfied with their child's care. These findings are essentially similar to those reported from the Hunter region in 1996.21 This is despite the publication of the National Health and Medical Research Council (NHMRC) guidelines in 1997, which emphasized the importance of multi-informant assessment and combination modality treatment.22 Several findings stand out and suggest priorities for where energy might be most productively spent in the next phase of professional development around ADHD. Information from schools was used in only 66% of cases to reach a diagnosis. This is at odds with the DSM-IV requirement for symptoms to be present to an impairing level at both home and school.23 Collaborative management at the health–education interface is pivotal to achieving optimal outcomes for children with ADHD, particularly given the high rates of comorbid learning disabilities.24 An innovative model of family-centred, school-based, multidisciplinary work has been successfully implemented for children with a range of developmental disabilities (including ADHD) in Australia, with promising early evaluation data (Foster J, personal communication). This model is expensive and requires creative, mixed funding structures involving government, the private sector and schools. The conceptual and linguistic dissonance between paediatricians and teachers was highlighted in a recent study from Brisbane.25 It might be helpful for paediatricians and teachers to be involved in reciprocal training and professional development activities. It is hoped that some novel thinking and opportunities may arise out of the current Federal House of Representatives review of teacher training.26 It is noteworthy that 60% of parents of children who had been trialed on both methylphenidate and dexamphetamine (n = 112) preferred methylphenidate, whereas only 27% preferred dexamphetamine. This provides further validation for the recent decision by the Pharmaceutical Benefits Advisory Committee to list Ritalin 10 mg tablets on the Pharmaceutical Benefits Scheme (PBS). This is a positive development towards equity of access to all available treatments for all patients with ADHD. It is hoped that the PBS will, in due course, consider listing of long-acting stimulant preparations, as well as non-stimulant medications for ADHD. The non-medical therapy that was reported as helpful by the highest proportion of parents was 'specialist teacher for academic support'– 88% of 91 parents whose children had received this support. This is not surprising, given the executive function deficits these children have to struggle to overcome in the busy classroom environment. The problem is that very few children with ADHD meet the narrow eligibility criteria imposed by state departments of education for funding for specialist educational or even additional ('integration') classroom support. This puts these children at great disadvantage with regard to accessing the curriculum to meet their learning potential. There appears to be little enthusiasm in education departments for shifting the current, categorical paradigm of special-needs support for those at the most disabled 2–3% end of the spectrum. This leaves the next group with a range of learning difficulties, the '10–15%', to fend for themselves as best they can in a system which sometimes seems designed to thwart their efforts. As a society we are not serving this group of learning-disabled children well, and the consequences are commonly seen in outcomes such as school drop-out, low adult literacy, secondary emotional problems, and long-term unemployment. This contributes to the increasingly evident cycle of intergenerational social disadvantage. Attention deficit hyperactivity disorder is a complex condition. The majority of children with ADHD have at least one comorbid developmental condition, including learning disabilities, oppositional defiant disorder, conduct disorder, anxiety, depression, and pervasive developmental disorders.28 In many cases, these problems are embedded within a context of psychosocial adversity. Child and adolescent mental health services (CAMHS) services are difficult to access, and do not suit the needs of some families. In order to manage the more complex cases, paediatricians effectively need to practise as mental health professionals. Publicly funded multidisciplinary developmental clinics are thin on the ground. Coordination between health, education, social services, juvenile justice etc has traditionally been poor, although efforts are being made to develop links. The Medicare Benefits Schedule does not provide an incentive for paediatricians in private practice to support families of children with complex developmental problems such as ADHD optimally, as we do not have access to time-based item numbers (in contrast to some other medical specialties, e.g. psychiatry). We need to develop more efficient, integrated and responsive models of care for children with developmental–behavioural (mental health) problems. We need to understand and then challenge the prevailing philosophies of systems across sectors that are failing to meet the needs of many of our most vulnerable children. As paediatricians, we need to assert our central role in the medical management of children with ADHD and related conditions, and get smarter about working effectively with other professional groups.