Attention-Deficit Hyperactivity Disorder (ADHD) is one of the most common chronic childhood neurodevelopmental disorders, characterized by developmentally inappropriate inattention, hyperactivity and/or impulsiveness (1). Widely accepted as a disorder in the Western world, despite ongoing controversies about its nature and treatment, particularly with medications, ADHD is increasingly being diagnosed within East Asia. ADHD has an estimated prevalence of 6.3 percent of children in China (2) and is associated with academic underachievement (3), emotional liability (4), and behavioural problems (5). ADHD is highly heritable, with offspring having approximately a 34% chance of being diagnosed with ADHD when both parents are (6, 7). It is a chronic disorder with 50% of those individuals diagnosed in childhood continuing to meet DSM-IV criteria for ADHD as adults (8). In adults living with ADHD the condition often manifests as a sense of internal restlessness, deficits in higher-level executive functioning, and emotion control (9, 10). This can often result in challenges in maintaining relationships, increased risk of substance abuse, and occupational difficulties (11–13). North American, European, and Chinese ADHD treatment guidelines recommend a multimodal treatment approach which combines medication, education, and behavioural therapy (14–17). Although we well know how to treat ADHD effectively, it remains difficult to treat well, because the outcome depends on a multi-modal, multi-professional, inter-agency approach, monitoring and adherence to treatment, and the management of other associated developmental disorders (18).
There are several challenges in the implementation of good-quality ADHD care in China. Such challenges can be viewed from both historical and cultural perspectives. China has undergone major economic reforms since the 1980s. Whereas previously medical services were accessed using rural community-led clinics and urban private hospitals, the Chinese medical system now comprises of different levels of hospitals, with varying levels of care spread around the country. Level 1 hospitals offer basic levels of care and are often located in rural communities. Level 2 hospitals offer increased care and make use of better equipment when compared to Level 1 hospitals, and are located in denser municipalities, districts, or provinces. Level 3 hospitals offer specialized care and are the best equipped health facilities within the country (19). The level of education a physician has achieved in China dictates the type of hospital in which they may be employed. “Village doctors” hold a primary education level (1–3 years) and may work within rural communities. Physicians that hold secondary education (2–3 years) are permitted to work at Level 1 and Level 2 hospitals. Physicians with tertiary education (3 + years) may work in Level 2 and Level 3 hospitals. That being said, many hospitals within China require additional physician training in order to meet the requirements for employment (19). The level of care that a patient receives is ultimately dependent on the treating physician’s level of education. These differences in education create problems with the diagnosis and treatment of children with ADHD within the country, resulting in delayed initiation and/or poor follow-up care for most patients. Primary care within Chinese urban settings is provided by General Practitioners (GPs) who are undertrained in general clinical psychiatry at the university level (20, 21). As a result, these GPs often consider themselves not sufficiently competent to manage the diagnosis and treatment of children and adolescents with ADHD. Conversely, patients seeking mental health treatment often opt for specialist treatment within Level 3 hospitals without first seeking referrals from GPs due to a lack of trust in the treating abilities of GPs. This treatment seeking behaviour, coupled with an extreme shortage of specialists trained in ADHD management (approximately 500 specialists for 200 million children) creates an enormous burden in the mental health system within China. Patients are often faced with lengthy wait times for initial treatment and follow-up visits, must travel long distances to receive care (specialists are primarily located in dense urban areas) and in general, many do not receive the proper ADHD care that they require.
This shortage of specialists and inadequate training of general practitioners is not unique to China. In Canada, several systemic changes have been implemented to address these problems. For example, the Canadian Psychiatric Association and the College of Family Physicians of Canada have established strong collaborative bonds between family physicians and psychiatrists to promote timely evaluation and treatment for mental health conditions (22–24). Patients with uncomplicated mental health problems are treated by GPs while consultation-liaisons by specialists meet the needs of the most complex patients (25). Such a shared care approach can be generalized to other healthcare professionals such as pediatricians, nurses, therapists, and community resource managers to improve access to mental health care (26).
With this in mind the ADHD Shared Care Program focuses on four core principles: patient care pathway, shared care, stepped care, and standardization of information. Within the patient care pathway, treatment is based on relevant evidence and the work of a multidisciplinary team that focuses on a defined group of patients (those diagnosed with ADHD). Treatment take place over a specified timeframe during which different intervention are defined within a pathway, implemented, and documented with the goal of facilitating communication and shared decision making. Stepped care defines how treatment is delivered according to the needs of the patient. This means that the most effective and least resource-intensive treatment is provided by PCPs, while more intensive and specialized services are more frequently used as the severity of the condition increases. Shared care relies on effective collaboration and communication based on defined criteria between primary and specialized care caregivers. Finally, standardization ensures effective and reliable communication of information within and between care teams and the family/patient. This allows a patient to transition from one stage to another, and from one level of care to another in the most cost-effective and timely manner.
In China, the vast majority of children with ADHD do not have access to timely diagnosis and treatment in China. A shared-care approach could address several difficulties in the management of children with ADHD in China by addressing the scarcity of specialists, the complexity of a systematic approach to ADHD, and the lack of training of PCPs. In line with Chinese guidelines for diagnosis and treatment (17), the program also provides multimodal treatment combining educational, behavioral, and pharmacological approaches. This program promotes shared responsibilities between PCPs and specialists within a well-defined care pathway. Within this shared-care perspective, it is essential to define which specialists are best able to successfully collaborate with PCPs and in what setting. In China, despite progress over the last decades, there is an extreme dearth of child psychiatrists overall (27, 28). In a previous study, we examined the barriers and factors to implementing an ADHD treatment program in the Beijing psychiatric environment (29), where a level 3 psychiatric hospital (Sixth Hospital of Peking University) had entered into a partnership with Haidian Mental Health Hospital and associated community hospitals to improve the management of mental health services in lower-level hospitals. However, to address this shortage of specialist, pediatricians and some GPs also are a resource, as they are encouraged to train in the early diagnosis and basic treatment of the most common mental health disorders in childhood. Moreover, Developmental Behavioral Pediatrics is recognized as a pediatric subspecialty in China. Developmental behavioral pediatricians have specialized training and expertise in the assessment and care of children with a broad range of developmental, learning, and behavioral difficulties, including ADHD, and may have an easier connection with GPs and pediatricians.
Therefore, we aimed in this study to identify the challenges and facilitators of implementing this program between a developmental behavioral pediatrics service in a Level 3 hospital (Xinhua Hospital affiliated to Shanghai Jiao Tong University School of Medicine) in Shanghai and a level 2 behavioral pediatrics services in Chongming Hospital (within the provincial-level municipality of Shanghai but two-hours' drive from downtown), and in Ninghai Maternity and Child Health Care Hospital (in Zhejiang province, 280 km away) which are in turn associated with regional community hospitals (Level 1 and 2).