Integration of Pediatric Behavioral Health Services in Primary Care: Improving Access and Outcomes with Collaborative Care

The Public Health Challenge

Pediatric mental disorders affect approximately 1 in 5 children, and serious mental disorders typically begin early in life, with approximately 50% developing by age 14 years and 75% by age 24 years. ¹ Despite a growing appreciation of the public health relevance of mental disorders in childhood and adolescence and an increasing number of effective, scientifically supported treatments, most affected youth receive no mental health services and the services delivered are often wanting in quality and/or quantity. ^2,3 This is particularly disturbing given that mental and substance use disorders are prominent risk factors for some of the most important causes of death in the pediatric age group, most notably suicide, and a growing body of evidence suggesting that improved access to mental health services can reduce the risk of suicide in young people. ⁴ Pediatric mental disorders are highly prevalent and often present in general medical settings, but traditional mental health service delivery relying on specialty mental health referral has many limitations. ^5,6 One important strategy with potential to improve access to pediatric behavioural health services and overcome existing barriers to care is the integration of such services in the primary care setting.

Barriers to Care

Barriers to mental health care have been conceptualized as structural and attitudinal, with stigma related to mental- and substance-related disorders a likely underpinning of both types of barriers. Structural barriers include fiscal challenges such as inability to pay and insurance restrictions, operational inefficiencies and deficiencies, a system that segregates physical and mental health care delivery, geography and transportation problems, and shortages and maldistribution of competent, experienced care providers. There is a serious shortage of pediatric behavioural health specialists, and access to specialty behavioural health care is quite limited, particularly for low-income, minority, and rural populations. ^{7 –9} Child and adolescent psychiatrists are especially in short supply, and this is unlikely to improve and may even get worse if existing patterns of training and support are maintained. ^10,11 Mental health specialists tend to cluster in more highly populated and affluent areas, contributing to especially poor access to services for low-income and rural youth, and minority youth may be at special risk. ¹²

Although most children and adolescents with recognized psychosocial problems are managed by primary care clinicians (PCCs), ‘real-world’ primary care management often fails to meet recommended standards for treatment intensity and follow-up, with low rates of case recognition, evidence-based treatment, specialty mental health referral, and referral completion being the rule. ^9,13,14 Linkage with specialty mental health services is especially poor, with less than half of pediatric patients referred for off-site specialty mental health services from primary care ever seeing a specialist within the ensuing 6 months. ^15,16 Meaningful care coordination is lacking in the majority of pediatric practices, and PCCs report inadequate training and relative discomfort in the management of pediatric mental disorders and suicidality. ^8,9

As challenging as structural barriers to the delivery of pediatric mental health services may be, attitudinal barriers to treatment initiation and continuation may be even more important to address. ¹⁷ Young people suffering from mental disorders and their families may not perceive a need for treatment, may wish to address the problem on their own, may be pessimistic about the effectiveness of available treatments, or may lack trust in providers of care. ¹⁸ Attitudinal barriers may also exert differential effects in specific demographic, ethnic and cultural groups, and settings. For example, African American families express greater concerns about the safety of antidepressant medications than nonminority families. ¹⁹ Provider beliefs and attitudes are also relevant, as providers may be uninformed or inordinately pessimistic about the availability and effectiveness of existing behavioural health treatments. ²

Beyond structural and attitudinal barriers is the practical problem of patient and family inertia. Although low rates of referral completion are commonly attributed to structural and attitudinal barriers alone, rates of specialty mental health referral completion have been disappointingly low even in studies that have applied special efforts to enhance the referral process, ^15,16 including one embedded within a well-regarded and prepaid health delivery organization that emphasizes ready access to mental health services for members. ²⁰

Primary Care and the Medical Home: An Opportunity

Primary care is first-contact personal health care that is comprehensive and delivered longitudinally within a community-based medical setting. The majority of children and adolescents in the United States will make a primary care office visit at least once annually. ¹³ Children and adolescents with common mental problems and disorders compose a high-risk and high-opportunity population for PCCs and our health system. ²¹ For example, the American Academy of Pediatrics (AAP) recognizes suicide prevention as a priority for pediatricians and has endorsed guidelines for the care of depressed youth in primary care. ^22,23 Primary care has increasingly become the de facto mental health system, with families increasingly recognizing PCCs as resources for the management of psychosocial concerns and the management of psychoactive medications. ¹⁴ Unfortunately, although most treatment for mental disorders in the United States is already being provided in primary care, ‘real-world’ primary care management often fails to meet recommended care standards. ^24,25 PCCs report inadequate training and relative discomfort in managing common mental disorders and suicidality, and evidence-based psychotherapy is difficult to access in primary care, constraining patient choice.

The medical home is a model of team-based primary care delivery that is accessible, continuous, comprehensive, patient and family centered, coordinated, compassionate, culturally effective, and led by a personal physician. ²⁴ The medical home is responsible for directly providing or appropriately arranging for all of the patient’s health needs, including preventive services and acute and chronic illness management. Additional attributes include commitment to evidence-based practice and the use of technology (e.g., telephone, email, electronic medical record) to make care more accessible and convenient. Professional organizations that champion the medical home include the American College of Physicians, the American Academy of Family Physicians, and the American Academy of Pediatrics. Managing common mental disorders in the medical home has potential to diminish stigma by communicating that mental health services are a critical component of health care.

Integrated Pediatric Mental Health Services in Primary Care

Beyond traditional referral to a mental health specialist in a separate practice location, several approaches to delivering mental health services to children and adolescents in primary care have been explored. ⁵ The public health advantages of primary care include its familiarity, proximity, ease of access, and relative acceptability for patients and families. ¹⁴ Involvement of PCCs in the management of children and adolescents suffering from common mental disorders challenges stigma and artificial distinctions between physical and mental health. Efforts to integrate behavioural health services within primary care have used broadly considered strategies, one where mental health expertise is housed off-site in a different geographic location and another that includes mental health professionals who are geographically present in primary care. Off-site consultation models use mental health specialists to provide brief, focused input to PCCs, most commonly through the use of the telephone consultation. Several statewide initiatives have championed this approach, including the Massachusetts Child Psychiatry Access Project ²⁶ and the state of Washington Partnership Access Line. ²⁷ In the latter programs, PCCs can access a child and adolescent psychiatrist for a patient-focused telephone consultation on a broad range of issues, including diagnosis, intervention options, the specifics of management and ongoing monitoring, and determination of the most appropriate level of care.

Models focused on training PCCs to improve their skills and capacity to care for behavioural health problems and disorders have been developed and tested. ²⁸ A variety of approaches have been tried, from didactic presentations and group consultations outside the specific practice site to the application of ongoing peer consultation and clinical practice guidelines to the management of attention-deficit/hyperactivity disorder (ADHD). ²⁹ Relatively large-scale efforts focused on PCC training and ongoing practice-based consultation include that of the REACH Institute (www.thereachinstitute.org) and the Ohio Minds Matter project (www.ohiomindsmatter.org), a state-sponsored program to aid PCCs in the assessment and management of pediatric mental problems and disorders, with the explicit goal of improving the quality and safety of psychopharmacologic practice.

On-site initiatives deploy specialty trained behavioural health professionals in the primary care practice setting. The most frequently applied and most straightforward approach essentially involves co-location of mental health professionals in primary care, with little in the way of planned and deliberate interaction or care coordination with on-site PCCs. An example would be that of a practice leasing space to a mental health professional or mental health specialty group. Several studies have examined the delivery of standardized interventions by behavioural health specialists co-located in primary care, with examples focused on anxiety, depressive, and functional somatic symptoms and disorders including the use of brief cognitive-behavioural therapy, ^{30 –32} interpersonal psychotherapy, ³³ and the application of Internet-based psychotherapy. ³⁴ Interventions for pediatric disruptive behavioural problems that have been applied in primary care settings include the Incredible Years, ³⁵ Parent-Child Interaction Training (PCIT), ³⁶ and the Triple P-Positive Parenting Program. ³⁷

Evidence from studies with adults supports the effectiveness of integrated behavioural health services in primary care in improving the management of common mental disorders such as anxiety and depressive disorders. ^{38 –41} Consistent with studies in adults, a recent meta-analysis of randomized, controlled pediatric trials comparing the effectiveness of integrated behavioural health services in primary care to usual practices found significant but modest benefits in outcomes (effect size d = 0.32, P < 0.001) to be associated with integrated behavioural health approaches. ⁴² Greater improvements have been associated with the delivery of treatments for emotional and behavioural problems and disorders compared to preventive interventions and those targeting substance abuse. Strikingly, pediatric behavioural health integration studies that applied collaborative care interventions demonstrated the most robust and positive effects on outcomes. ⁴² This finding, alongside results from more than 70 trials of collaborative care interventions in adults, ⁴¹ suggests that collaborative care is the best supported and well-tested strategy for managing mental disorders in primary care settings. ⁴³

Stepped Collaborative Care and the Chronic Care Model

Collaborative care encourages PCCs and behavioural health specialists to work together to improve the health of patients presenting in primary care. Evidence from studies with adults suggests that meaningful improvements in the management of mental disorders in primary care settings require systemic changes in primary care practice and access to a comprehensive system of mental health services. ^{38 –40} Isolated efforts such as screening, provider education, dissemination of practice guidelines, and enhanced referral alone do not result in meaningful improvements in patient outcomes in the absence of changes in the nature of the care delivery system.

Collaborative care is based on the chronic care model (CCM) of illness management. ^44,45 The CCM has powerfully influenced the conceptualization of the medical home and advocates for collaboration between PCCs and health care specialists in the care of chronic conditions in primary care. The CCM maintains that optimal care is achieved when well-informed and motivated patients and families interact with a well-prepared, proactive, and interdisciplinary care team who communicates well and participates regularly in the care of a defined patient group. By incorporating care coordination and fostering both wellness and prevention, the CCM shifts the traditional acute care focus in primary care to a longitudinal perspective.

Goals of the CCM include ensuring that a mutually understood and agreed upon care plan is in place, that patients and families have the skills and confidence necessary to manage the condition, that the most appropriate treatments are available for optimal illness control and prevention of complications, and that accessible and continuous follow-up care is available. Core elements include 1) a leadership team composed of organizational partners with accountability for implementing the model; 2) decision support in the form of access to specialists and evidence-based guidelines; 3) delivery system design to promote access to management guidelines and protocols, a care manager (CM) responsible for coordinating care with PCCs and specialists when necessary, and a patient care registry to better track and manage care longitudinally; 4) clinical information systems to provide the technological underpinnings necessary to facilitate the roles of PCCs and CMs; 5) self-management support consisting of facilitating patient activation, skill building, and understanding of targeted disorders and treatment options in support of self-care and shared decision making; and 6) access to community resources to aid patients and families independent of health care providers. ^44,45

Collaborative care approaches based on the CCM have been applied to chronic illnesses such as diabetes and hypertension ⁴⁴ and have been successfully adapted to the care of adults with depressive and anxiety disorders in primary care. ⁴¹ These approaches integrate behavioural health specialists into the primary care setting as educators, consultants, and clinicians. Consistent features associated with successful collaborative care interventions for mental disorders in primary care include the availability of a nonphysician care manager (CM) and access to a consulting psychiatrist. ^21,38 A stepped care approach acknowledges the need for different levels of care delivery depending on the type of disorder, its severity, complexity, and/or persistence in the face of intervention, with stepped collaborative care being based in an ongoing collaboration between specialists and PCCs across levels of care. ²¹ Such interventions may be cost-effective, particularly when the intervention targets anxiety or depression in patients who are high service users and/or have comorbid physical diseases such as diabetes. ^21,46 Applied use of technology as simple as telephone monitoring by a CM has been shown to improve care for depression and anxiety in the collaborative care context ^47,48 and reduce suicide risk in adults. ⁴⁹

Collaborative Care for Pediatric Mental Disorders in Primary Care

Adult experience with collaborative care approaches to the management of mental problems and disorders in primary care inspired initiatives in pediatric settings. A descriptive report documented the real-world feasibility of a collaborative care approach to the management of pediatric mental disorders in primary care using an on-site nurse practitioner working collaboratively with an on-site psychiatric social worker and a consulting child and adolescent psychiatrist in a large, rural, primary care practice. ⁵⁰ Credible clinical research has subsequently documented efforts to apply collaborative care interventions in primary care to disruptive behavioural problems and disorders in children ^15,16,51 and to depression in adolescents. ^{20,52 –54} In their recent review and meta-analysis, Asarnow and colleagues ⁴² found that collaborative care interventions delivered stronger effects on outcomes than other integrated care efforts, with an effect size of d = 0.63 reflecting a 73% probability that a randomly selected child or adolescent struggling with a mental disorder in primary care would experience better outcomes in response to collaborative care than another randomly selected youngster receiving usual care.

The evolution of efforts to manage childhood disruptive behavioural problems in primary care suggests that collaborative care approaches are associated with better outcomes than on-site interventions where behavioural health professionals and PCCs work in parallel. The first in a series of studies focused on managing childhood disruptive behavioural problems in primary care applied a modular psychotherapeutic intervention delivered on-site by a trained nurse. ¹⁵ Although superior to usual care with regard to improving access to care, engagement in mental health treatment, and consumer satisfaction, symptomatic and functional outcomes between the groups were minimal and uninspiring. Subsequent trials incorporating additional features informed by the CCM such as an expanded role for the on-site nurse as a care manager, attention to comorbid conditions such as ADHD and anxiety, development and implementation of decision support materials for PCCs such as a treatment algorithm for ADHD, and the active involvement of a child and adolescent psychiatrist as a supervisor and consultant for study care managers and PCCs demonstrated significantly better symptomatic and functional outcomes for the active intervention. ^16,51 In a study that cluster randomized 321 children ages 5 to 12 years from 4 primary care pediatric practices equipped to deliver a collaborative care intervention known as doctor-office collaborative care (DOCC) and 4 other practices employing enhanced usual care consisting of psychoeducation and facilitated referral, DOCC was associated with significantly higher levels of treatment initiation and completion, treatment response, consumer satisfaction, and PCC confidence relative to the control condition. ¹⁶

An illustration of a collaborative care intervention for adolescent depression in primary care is provided by the Reaching Out to Adolescents in Distress (ROAD) study. ²⁰ The ROAD intervention used master’s-level clinicians as depression care managers who facilitated treatment for depression in primary care with antidepressant medication, brief cognitive-behavioural psychotherapy, or the combination. Care managers met weekly with a consulting psychiatrist, psychologist, and pediatrician. Adolescents randomized to the ROAD intervention were significantly more likely to receive depression treatment consistent with accepted standards (86% vs. 26%), respond to treatment (68% vs. 39%), and achieve remission (50% vs. 21%), and they reported higher levels of satisfaction with care. ²⁰

Finally, Weersing and colleagues ⁵⁵ conducted a trial of brief behavioural therapy (BBT) for anxiety and depressive disorders in children and adolescents ages 8 to 16 years, inclusive, randomizing 185 youth to BBT or assisted referral to care (ARC) in 9 pediatric primary care practices in San Diego, California, and Pittsburgh, Pennsylvania. BBT produced statistically significant differences compared to ARC in overall clinical improvement (56.8% vs. 28.2%), reductions in anxiety and depressive symptoms, and improvement in overall functioning, with results being robust and consistent across sites.

Much work needs to be done to disseminate what has been learned about collaborative care as a means of improving access to mental health services in primary care settings. Although studies have demonstrated benefits associated with the use of collaborative care for pediatric mental problems and disorders in primary care, relatively little is known about optimal ways to structure and organize the primary care practice setting aside from the few models put forward in externally funded, controlled trials. In addition, existing training models in psychiatry, psychology, nursing, and social work have yet to consistently offer opportunities for interdisciplinary education in the delivery of team-based collaborative care. The Medical Psychiatry Alliance was formed in Ontario, Canada, in 2014 and is focused on the integration of behavioural health services in primary care settings. Participants include the University of Toronto; Trillium Health Partners, a large 3-site community hospital serving patients across the life span; the Center for Mental Health and Addictions, a major academic hospital for the treatment and study of patients with major mental illness and addiction; and The Hospital for Sick Children, an internationally recognized pediatric hospital. Funding provided by the Ministry of Health of Ontario, a very generous donor, and the partnership hospitals will support creation of an integrated and collaborative system of care for patients across the life span with medically unexplained symptoms and co-occurring medical and psychiatric disorders, ⁵⁶ as well as relevant new approaches to education and evaluation.

Conclusion

Collaborative integration of behavioural health services into primary care is a promising, multifaceted approach to improving access to care and outcomes for children and adolescents struggling with mental problems and disorders. Integration has potential to address both structural and attitudinal barriers to care delivery and to challenge stigma by communicating that health cannot be compartmentalized into physical and mental components. Given that primary care is increasingly recognized as the foundation of modern health care, integration lends credibility to behavioural health services, reassuring families and challenging PCCs who might have previously been uneasy and even avoidant in addressing such problems in primary care. Integrated care creates opportunities to address shortages and the geographical misdistribution of behavioural health specialists by leveraging the infrastructure of general medicine. Specifically, stepped collaborative care interventions have been demonstrated to be feasible and effective in improving access to behavioural health services, outcomes, and patient and family satisfaction relative to existing care models. Fiscal and regulatory models that accommodate the application of collaborative care interventions in real-world primary care settings are needed, but efforts to address fiscal challenges such as inadequate insurance coverage and poor provider reimbursement alone are unlikely to produce satisfying results without requisite changes in the structure and culture of health service delivery.