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Affective disorders in children and adolescents: addressing unmet need in primary care settings
Affective Disorders in Children and Adolescents: Addressing Unmet Need in Primary Care Settings Kenneth B. Wells, Sheryl H. Kataoka, and Joan R. Asarnow Affective disorders are common among children and adolescents but may often remain untreated. Primary care providers could help fill this gap because most children have primary care. Yet rates of detection and treatment for mental disorders generally are low in general health settings, owing to multiple child and family, clinician, practice, and healthcare system factors. Potential solutions may involve 1) more systematic implementation of programs that offer coverage for uninsured children; 2) tougher parity laws that offer equity in defined benefits and application of managed care strategies across physical and mental disorders; and 3) widespread implementation of quality improvement programs within primary care settings that enhance specialty/primary care collaboration, support use of care managers to coordinate care, and provide clinician training in clinically and developmentally appropriate principles of care for affective disorders. Research is needed to support development of these solutions and evaluation of their impacts. Biol Psychiatry 2001;49:1111–1120 © 2001 Society of Biological Psychiatry Key Words: Depression, child mental health services, primary care, unmet need
Introduction
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his article examines the role of primary care practices in addressing unmet need for treatment of child and adolescent affective disorders and considers some practice and policy solutions to address unmet need. Further, while services research on children and adolescents with affective disorders is generally limited, it is especially undeveloped for bipolar disorder. Therefore the perspective in this article is primarily shaped by more general literature on care for children with mental health problems and studies of adults with affective disorders. Development of From the Department of Psychiatry (KBW, SHK, JRA) and Biobehavioral Sciences, University of California, Los Angeles, California; and the Robert Wood Johnson Clinical Scholars Program (SHK). Address reprint requests to Kenneth B. Wells, MD, MPH, Professor of Psychiatry and Director, UCLA Health Services Research Center, 10920 Wilshire Boulevard, Suite 300, Los Angeles, CA 90024-6505. Received November 11, 2000; revised February 5, 2001; accepted February 7, 2001.
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a comprehensive services research literature that spans clinical epidemiology and clinical and policy intervention research on children and adolescents with affective disorders should be a high research priority.
Impact and Appropriate Treatment of Affective Disorders in Youths Affective disorders are leading causes of disability worldwide and impose substantial health and economic burdens on individuals, families, and communities (Murray and Lopez 1996; Wells et al 1996). One reason for the high associated disability is that, unlike many chronic illnesses that primarily affect older adults, affective disorders are prevalent across the life span. In particular, roughly 20% of U.S. youth may experience a depressive episode by the age of 18 years (Lewinsohn et al 1993), and bipolar disorder commonly begins in adolescence or early adulthood (McClellan and Werry 1997). Affective disorders are major risk factors for suicide, a leading cause of death in adolescents (National Health Care Statistics 1995). Youth with affective disorders may develop dysfunctional patterns that persist through adulthood, reducing productivity. For example, depression in youth is associated with poor social functioning, decreased school performance, increased risk for drug and alcohol use, and nicotine dependence (Asarnow and Ben-Meir 1988; Hammen 1990; Kandel and Davies 1986; Kovacs and Goldston 1991; Rao et al 1995; Ryan et al 1987). Evidence that depression is increasing in prevalence and that age of onset is declining enhances the importance of developing accessible, effective service delivery systems for children and adolescents (Gershon et al 1987; Lewinsohn et al 1993; Ryan et al 1992). Treatments of probable efficacy have been identified for youth with affective disorders, especially for adolescents, and practice guidelines based on this evidence and clinical consensus have been formulated. Practice guidelines for youth depression include psychotherapies, such as cognitive behavioral therapy (CBT) and interpersonal psychotherapy (IPT), and psychopharmacological treatment (Birmaher and Brent 1998; Hughes et al 1999; Kaslow and Thompson 1998). There is some evidence that brief, 0006-3223/01/$20.00 PII S0006-3223(00)01113-1
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structured psychotherapy may be efficacious in young children with symptoms of depression (Jaycox et al 1994; Stark et al 1987; Weisz et al 1997); however, replication of these studies is needed. Cognitive behavioral therapy appears to be effective in adolescents with either depressive disorder or with depressive symptoms but no current disorder, and it may reduce incidence of major depression in adolescents who have parents with an affective disorder (see Asarnow et al in press; Clarke et al 1995; Lewinsohn et al 1996; Wood et al 1996). Limited evidence is available for the short-term safety and efficacy of selective serotonin reuptake inhibitors (SSRIs) for the treatment of child and adolescent depression (Emslie et al 1997; Jensen et al 1999; Simeon et al 1990). For bipolar depression, practice guidelines conclude that the only specific treatment for youth bipolar disorder is medication therapy using a mood stabilizer and that care must be taken in using antidepressant agents (McClellan et al 1997). As with unipolar depression, it is recommended that bipolar youth receive psychosocial interventions, but this is primarily based on adult studies.
Unmet Need for Child Mental Health Care Despite availability of these guidelines, most children and adolescents with an affective disorder may not receive appropriate treatment. Unlike information available from adult studies, there are no national data describing access to appropriate care for representative children and adolescents with affective disorders (Wells et al 1996; Young et al 2001). Yet the literature suggests that less than half of those children and adolescents with more broadly defined mental health need receive any mental health services (Leaf et al 1996; Offord et al 1987; Zahner et al 1992).
Primary Care and Treatment of Child Mental Disorders Primary care settings could represent an important opportunity to address unmet need for treatment of child and adolescent affective disorders. The majority of children and adolescents have some contact with a general medical provider within the course of a year, if only for well-child visits or school physicals. For example, 70% of youth between 10 and 18 years of age visit primary care providers in a year, averaging three visits per year (Gans et al 1991; Monheit et al 1992). Thus, primary care offers some promise as a site for intervention with children who have affective disorders. Despite the promise of primary care settings for improving access to treatment for affective disorders in youth, studies suggest that when children and adolescents receive mental health care, it is usually provided through schools
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and mental health specialists, rather than by primary care providers (Burns et al 1995). Thus it is unlikely that primary care is currently filling much of the gap in unmet need for mental health care generally, or by implication for affective disorder treatments. For example, Burns et al (1995) found that the school system was the sole provider of services for nearly half of children with serious emotional disturbances. Among youth who received services and had a diagnosis and impaired functioning, roughly 70% received services from schools, about 40% received services in the specialty mental health sectors, and smaller groups of youth received services within the child welfare sector (about 16%), the juvenile justice sector (roughly 4%), and in the general health sector (about 11%); however, these findings may underestimate the level of mental health care actually received in primary care, because these data were based on parent report and not on records, such as medication prescriptions. Provision of mental health treatments within primary care is commonly conceptualized as including clinician detection of mental disorder, initiating and monitoring treatment, such as medication or counseling or therapy or both, and referral to or coordination with specialty care providers (Wells et al 1996). These components of treatment occur within a patient/family provider relationship and overall clinical management strategy that also addresses other health and development issues, including compliance with recommended treatments. Further, these individual care issues occur within a broader practice context that is shaped by needs of other patients, and characteristics of clinicians, practice settings, and health systems (McGlynn et al 1988). A health services research perspective of care for youth affective disorders in primary care potentially includes the provision of treatments, the care relationships, the clinical management strategies, and the contextual factors, including issues such as insurance coverage. Current studies indicate that pediatricians identify mental health need in only 1%–16% of children, but 17%–27% of children in primary care may have a need for services (Briggs-Gowan et al 2000; Costello et al 1988a,b; Horwitz et al 1992; Lavigne et al 1998; Pagano et al 2000). More clinically precise studies of detection of specific affective disorders in primary care have been conducted with adults and confirm moderate to low rates of detection with some greater problems in detection under prepaid care (Attkisson and Zich 1990; Wells et al 1996). Kramer and colleagues similarly found low rates of detection and treatment of depressive disorders among adolescents in primary care in the United Kingdom (Kramer and Garralda 1998; Kramer et al 1999). Similar studies of adolescents are in the field in the United States (Asarnow et al 2000; Roberts et al 1991).
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The feasibility of screening for child psychosocial problems has recently been demonstrated in geographically diverse primary care practice settings, using the Pediatric Symptom Checklist (Jellinek et al 1999); however, widespread use of such screening measures requires evidence of acceptability to parents, children, and providers as well as data on effectiveness in affecting health outcomes and cost-effectiveness. For example, the U.S. Preventive Task Force (1996) has concluded that there is insufficient evidence for routine depression screening in primary care. In adults, prior studies failed to show much impact on quality of care or outcomes of screening and screening feedback to clinicians in the absence of a more comprehensive intervention framework that addresses treatment and the care management context (Attkisson and Zich 1990). More specifically, although detection of an affective disorder by a primary care provider may be an important first step to treatment, the aspect of care that affects patient outcomes is whether patients are provided with and utilize clinically appropriate care for their conditions. But, rates of appropriate treatment for affective disorders in primary care settings appear to be moderate to low. For example, Horwitz et al (1992) found that only 56% of children and adolescents detected as having a mental health problem by their primary care provider received any intervention. Further, the mental health services that are commonly provided to children in primary care settings may not be effective in treating child and adolescent depressive disorders. The average pediatric visit is roughly 10 min (Chang et al 1988), which limits the feasibility of evaluation and treatment within primary care without additional resources or referral. Studies suggest that mental health services in pediatric settings include supportive counseling (Costello 1986), for which there is no efficacy data in affective disorders (Kelleher and Long 1994); psychotropic medications (Kelleher et al 1989), for which effectiveness in these settings is largely unknown (Kelleher and Long 1994); and specialty referral. Rates of specialty referral from primary care settings vary across studies from 9%– 42% (Goldberg et al 1984; Lavigne et al 1993), but only one half of children recommended for a referral actually receive specialty care (Goldberg et al 1984; Lavigne et al 1993). Not surprisingly, average outcomes for children and adolescents with mental health problems in primary care are poor (Burns 1996).
Barriers to Detection and Appropriate Treatment in Primary Care These low rates of detection and appropriate care for mental disorders within primary care settings increase the importance of understanding the barriers to appropriate
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care, so that interventions can be designed to reduce those barriers and enhance opportunities for evidence-based mental health treatment. Studies of predictors of detection of mental disorders in children and of detection and provision of appropriate care for adults with affective disorder in primary care suggest that many factors may contribute to unmet need, as discussed below.
Child Characteristics Individual characteristics such as gender can affect detection of mental health problems, with clinicians more likely to detect these problems in boys than girls (Horwitz et al 1992). Among preschool children who received primary care and also had mental health need, older, white, and more impaired children had more mental health service use (Lavigne et al 1998). Further, unmet need for child mental health care may be higher among ethnic minorities and the uninsured (Department of Health and Human Services 1999), although studies of this issue have reached conflicting conclusions (Burns et al 1997; Glied et al 1997; Padgett et al 1993; Pumariega et al 1998; Zahner et al 1997).
Parental Characteristics Parental factors such as lack of recognition of the child’s problems or not communicating concerns to the provider can play a role in detection and treatment (Briggs-Gowan et al 2000; Hickson et al 1983). Parents are less likely to perceive a need for their child getting treatment if the child is depressed compared to having a disruptive disorder, although depressed children perceive more of a need for care than do children with disruptive disorders (Cantwell et al 1997; Wu et al 1999). Adult studies suggest that minorities, especially African Americans, are less likely to receive appropriate care for depression (Young et al 2001). In addition, parents who themselves have a mental health problem, such as depression, and who have a history of treatment, are more likely to have children who receive mental health services. This association may not only be due to the increased risk for psychiatric disorders in children of affectively ill parents (Beardslee et al 1998; Canino et al 1990; Hammen et al 1990) but also to greater parental familiarity with services, receptivity to seeking help, or a tendency for parents with mental health problems to report higher rates of problems in their children (Canino et al 1990). Financial constraints may also limit parent’s ability to obtain services for their child.
Clinician and Clinician–Patient Relationship Factors. Adult studies suggest that clinician knowledge and attitudinal factors, such as perceived skill, affect proclivities to
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detect and treat affective disorders (Meredith et al 1999). In child primary care settings, physician characteristics, such as being female, use of the DSM-IV, and use of psychosocial interview techniques, have been associated with the clinician being more attuned to the mental health concerns of patients (McLennan et al 1999; Wissow et al 1994). In primary care, visits are often brief and there are many competing demands for providers’ attention (Chang et al 1988). For example, Horwitz et al (1992) found that physicians were more likely to detect psychosocial problems during well-child as opposed to acute-care visits. Improving detection and treatment for affective disorders in youths is complicated by the diversity of clinicians that deliver care to youth, which includes pediatricians, adolescent medicine specialists, general and family practitioners, internists, gynecologists, and nurse practitioners and physician assistants. Children of different developmental stages typically have different mixes of providers within and across practice environments. Younger children, for example, may be more likely to regularly visit the same pediatrician, whereas older children and adolescents may visit less frequently and transition from pediatricians to adolescent medicine specialists to clinicians in other fields, such as family medicine, internal medicine, gynecology, or school-based health services. Detection and treatment is further complicated by a host of healthcare delivery and financing and organizational characteristics. These include lack of insurance coverage, limited insurance coverage, fiscal and organizational separation of services for physical, mental, and substance abuse disorders, and limited practice infrastructure for supporting integrated care with specialty providers (e.g., absence of therapists on site in primary care). Primary care providers may receive relatively limited coverage for providing psychotherapy or other mental health services, and in some plans may not be covered at all for most mental health services; yet child mental health specialty providers may not be available. Features of managed care may also affect access to care and intensity, and possibly appropriateness of services. One adult study found lower rates of detection of depression for prepaid than for fee-for-service patients, but this was before widespread implementation of managed care policies (Wells et al 1989). Generally for children and adolescents, staff-model health maintenance organizations lead to similar or high rates of mental health care but lower intensity and cost of services, compared to comparable unmanaged fee-forservice plans (Manning et al 1987; Wells et al 1990); however, most studies predated current fee-for-service plans that utilize some managed care strategies, such as preauthorization or utilization review. Impacts of these specific managed care strategies have not been evaluated
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for children with affective disorders and their effects on health outcomes of care are unknown even for adults. The widespread implementation of so-called “carveouts,” distinct behavioral health specialty management companies to manage benefits for both children and adults, poses other challenges (Gresenz et al 1998). Although access to some mental health care may have improved under some carve-outs (Goldman et al 1998), implementation of carve-outs is more difficult for children because of the low supply for child behavioral health providers. This may lead to greater reliance on adult specialty providers without training in care of children for delivering treatments for affective disorders or supporting primary care clinicians in doing so. Further, with mental health benefits managed through carve-outs, primary care providers may have less incentive to directly provide mental health services. On the other hand, in integrated health care systems, primary care providers may serve as gatekeepers to specialty mental health services (Martin et al 1989). This may be especially problematic for care of youths with affective disorder because of the more limited experience of primary care providers in evaluating and treating such patients. The diversity of organizational and financing arrangements in primary care practices suggests that there can be no one policy or healthcare system solution to the problem of unmet need for appropriate care for youth affective disorders in primary care or generally. Rather, diverse solutions may be needed across different practices depending on which mix of primary care and specialty clinicians are involved in youth affective disorder care, their ongoing relationships, and their training in child mental health care.
Finding Policy Solutions to Unmet Need: Coverage for the Uninsured and Parity for the Insured Two proposed policy solutions to system barriers, extending coverage to the uninsured and parity of coverage for mental and physical disorders among the insured, have been the subject of intense policy debate and legislation, so we provide additional discussion of their relevance to youth with affective disorders. These solutions to system barriers are echoed in a recent consensus statement by the American Academy of Pediatrics, in collaboration with the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatrists, and the American Psychological Association among others, which advocated for improvement in child mental health insurance coverage (American Academy of Pediatrics 2000). Uninsurance places children at risk for decreased access to primary care and potentially mental health services
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(Burns et al 1997; Holl et al 1995; Kogan et al 1995). Although rates of uninsurance in general have remained unchanged for adults, those adults with mental disorders, including affective disorders, have continued to have increasing uninsurance (Sturm and Wells 2000). One recent expansion of public health insurance for children has been the State Children’s Health Insurance Program (SCHIP), established in 1997 under the Balance Budget Act. The SCHIP makes federal grants available to states to provide health insurance targeting low-income uninsured children who do not quality for Medicaid. States have flexibility in developing a program that either expands the existing Medicaid program, creates a new program, or is a combination of both; however, mental health services are considered “additional” benefits and substance abuse services “optional” benefits under SCHIP (U.S. Department of Health and Human Services). Consequently SCHIP mental health benefits across states have varied in the type of disorders covered, copayments required, and types of services included. One of the earliest programs, New York’s Child Health Plus (CHPlus) Program, resulted in a substantial increase in utilization of primary care services but not specialty services (Szilagyi et al 2000). An urgent research priority is to understand how the implementation of SCHIP across multiple states has been affecting unmet need for youth mental health care, if at all, and the impact of access to mental health care through primary care and school settings, the only settings in which many lowerincome youth receive any care. The second proposed solution is parity, or state or federal laws that mandate equivalent coverage for mental health and physical health conditions. Such laws may be particularly important for youths, who tend to have higher costs when they do receive mental health care than do adults, and thus more commonly exceed coverage limits (Sturm 1997); however, parity laws may have limited impact if they concern only a portion of benefit terms, such as dollar coverage limits, or if at least some mental health coverage is not mandated. Evaluations of the impact of federal as well as state parity laws have primarily focused on adults rather than children and tend to show little if any effect of such laws on costs or use of mental health services (Sturm 1997; Pacula and Sturm 2000). Burnam and Escarce (1999) point out that parity of defined benefits may have relatively little meaning in the current managed care environment, and a more relevant concept is equity of coverage when both defined benefits and management policies are considered. This is an important direction for further policy development and research in addressing unmet need for care for youth affective disorders, across primary care and specialty care settings. Thus, although achieving some minimal coverage for
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uninsured youth with affective disorders may require more systematic implementation and standardization of benefits under programs such as SCHIP, achieving more comprehensive coverage for children in the private healthcare sector may well require tougher mandates that result in equity of opportunities for care based on benefits and employment of management strategies, as well as required inclusion of mental health coverage.
Finding Practice-Based Solutions: Implementing Quality Improvement Programs Quality improvement programs are interventions that increase opportunities for appropriate care, through providing training and resources to patients and providers, and system restructuring. There are diverse approaches to quality improvement, but we refer to implementation of evidence-based practice guidelines following a chronic disease management model, such as the collaborative care model (Katon et al 1995, 1996; VonKorff et al 1997). The collaborative care model for chronic illness outlined by Wagner et al (1996) and VonKorff et al (1997) and adapted for depression care by Katon et al (1995) and VonKorff and Tiemens (2000) provides a framework for population-based management of depression. The key components are: 1) case findings and outreach to individuals at risk for chronic disease; 2) consumer activation and self-management support to achieve sustainable, appropriate care; 3) provider education and decision support based on evidence-based practice guidelines; 4) structural changes in the delivery of care that facilitates fulfilling roles and accountabilities defined for a collaborative team, that supports care for depression at each essential step in care; 5) the use of information systems to support proactive follow-up and outcomes tracking; 6) care management to link services and support initiation of and adherence to evidence-based treatments; 7) consultation from mental heath specialists for patients whose depression is complex and difficult to treat; and 8) effective linkage with community agencies. Quality improvement models based on this framework commonly support education and activation of patients and/or families, integrate and coordinate care and facilitate follow-up and adherence through a care manager such as a trained nurse, support primary care clinician education, and use various strategies to support provision of guideline-concordant care through collaboration with specialty providers. For example, those providers may provide direct patient consultation, training sessions for providers, and supervision of primary care staff. Such models have been implemented extensively in studies of quality improvement for adults with affective
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disorder in primary care settings. In general, studies that have implemented most components of the collaborative care model for chronic disease tended to demonstrate positive effects on quality of care and outcomes (Katon et al 1995, 1996; Wells et al 2000). Recent studies using models that require fewer resources but still preserve the use of ancillary staff also reported improved outcomes (Hunkeler et al 2000; Simon et al 2000); however, some studies have negative findings, especially studies that rely primarily or exclusively on provider education rather than employing care managers or broader practice change strategies, such as patient education or activation, reductions in copayments, etc. (Brown et al 2000; Thompson et al 2000). It is premature to draw conclusions about which quality improvement strategies and underlying disease management models lead robustly to improved quality of care and outcomes for adult affective disorder in primary care. But a range of strategies seems to be effective, even when flexibly implemented by managed care practices themselves rather than by the research team (Wells et al 2000). Further, impacts can reach beyond clinical improvement and include quality of life as well as increased employment stability (Wells et al 2000). Thus, these interventions have potential to decrease the societal burden of affective disorders from reduced productivity, as well as being cost-effective from a more limited plan or practice perspective for sicker patients (Von Korff et al 1997). A quality improvement study for youth depression in primary care following the collaborative care model of chronic disease is currently in the field (Asarnow et al 2000). Other studies that evaluate efforts to improve care for depression within primary care clinics (Clarke et al 2000) and school-based clinics (Mufson and Dorta 2000) are also in progress. Kramer et al (1999) found that training general practitioners to use a screening and management guide for adolescent depression led to improved detection and some treatment for depression within the general practitioner visit. When adolescents received treatment within the visit, 92% of adolescents found it helpful. Weissman et al (2000) found that screening adult primary care patients for depression as well as emotional problems in their offspring may have promise as an early detection and intervention strategy for children. There are particular challenges with modifying quality improvement interventions for younger age groups. As demonstrated by the studies cited above, implementing quality improvement programs that reach children may require treating multiple generations and coordination across different agencies, such as schools and health providers. Another challenge is the early stage of development of the efficacy literature, such that the evidence basis for practice guidelines is not as certain as for adult
depression, for example. Conveying this uncertainty in a manner that is clinically useful within a real-world quality improvement program is challenging, especially given the different levels of maturity of the literature across age groups and different types of affective disorder. Further, because the most established psychosocial treatments for adolescents are structured psychotherapies, particularly CBT and IPT, a particular challenge to implementing meaningful quality improvement interventions in either primary care or specialty care is the limited availability of empirically validated psychotherapies for youth and lack of accountability in community settings for the form of psychotherapy provided. For example, it would be difficult for a primary care provider to know the form of therapy provided under a referral to a specialist, or whether CBT, if available, is implemented similarly to the protocols in efficacy studies. The problem of provision of verifiable psychotherapy for youth affective disorders touches on problems of availability of services, manpower distribution, accountability, and practice structure. Generally, as efficacy studies develop and as practice guidelines become more widely available for child and adolescent mental disorders, it will become more feasible to evaluate the impact of implementing these guidelines through quality improvement programs, or models of service delivery based on evidence-based practice guidelines. Evaluations of quality improvement programs usually require design and analysis strategies that depart substantially from the traditional randomized controlled trial (Wells 1999). These programs usually are implemented in community settings without masking or blinding and employ quasi-experimental designs, utilizing usual care providers and typical patients with a range of comorbidities. Analyses require careful statistical control for differences in compared patient groups due to selection, particularly if randomization is not used or randomization occurs at a group or practice level. Thus, the development of this research agenda within child and adolescent mental health services research may require strategies to disseminate some of these methodologies.
Discussion Although most children and adolescents have some general medical care in a year, typically this does not include mental health care or if it does, that care may be unlikely to be clinically appropriate for youth affective disorders. As a result, it is likely that depressed children and adolescents receive very little care that would be considered concordant with recommended treatments in primary care. A particular problem is the availability of appropriate psychotherapy within primary care settings, even though this is frequently the preferred initial treatment option for
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many youth. The relative lack of child mental health specialists increases the importance of training both adult mental health specialists and children and adolescent primary care providers in appropriate first-line treatment of depression in this age group; however, adult studies suggest that provider training alone is probably insufficient to achieve higher rates of care, and more sophisticated quality improvement interventions are likely to be needed. The question of whether quality improvement intervention strategies that are effective for adults with affective disorder hold a similar promise for youth with affective disorders should be one of the exciting areas of practice intervention research in the next decade. For youth, with many years of future life to be lived, impacts on quality of life and productivity may hold particular promise for reducing the societal burden of affective disorder over the life span. This implies a rigorous, longitudinal research agenda within primary care settings to develop the interventions, evaluate broad individual, family, and societal impacts, and address issues of sustainability and dissemination. Given the diversity of specialists and relationships among specialists caring for children and adolescents with affective disorder, and the diversity of primary care practice environments, these interventions should be designed to either be robust across practice settings and providers, for example by permitting flexibility in how the interventions are tailored to particular specialists or practice configurations, or should be targeted through a segmented research strategy to particular types of specialists or practice settings. The adult literature suggests that quality improvement interventions for depression in primary care that were initially developed and tested within one type of practice setting (i.e., more integrated, managed, private practices) can also be effective when subsequently applied flexibly across diverse settings (i.e., that include network model practices as well as public sector settings) (Katon et al 1996; Wells et al 2000). Sustained change in practice that delivers appropriate care to most youth with affective disorder is likely to require not only quality improvement within existing settings but development of supply of appropriate providers through education and training, and other system of care changes, such as improved coordination between specialty and primary care providers, and development of practice infrastructure to include and support ancillary staff necessary for disease management. Further, a rigorous research program is needed to identify cost-effective strategies that span quality improvement and manpower and infrastructure investment to achieve sustainable change in access to appropriate care for youth affective disorders. Achieving these deeper changes in practice structure
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and function may require policy changes, particularly more effective formulation and implementation of insurance coverage mandates that state and federal agencies have already initiated. We have particularly focused on the need for mandated, tough parity laws in the private sector, and implementing increased coverage more universally within and across states for uninsured children. Achieving the leverage to meet these goals is likely to require a high degree of consumer activity and advocacy, as well as improved research studies and findings that help identify the appropriate treatments, practice service delivery mechanisms, and public policies, and their consequences for unmet need, costs, and outcomes.
Supported by the National Institute of Mental Health (NIMH)–Research Center on Managed Care for Psychiatric Disorders Grant (MH546230) (all authors); The Robert Wood Johnson Clinical Scholars Program (Grant number 037098) (K.B.W., S.H.K.); and the Agency for Healthcare Research and Quality (AHRQ)–Youth Partners in Care Grant (HS09908) (K.B.W., J.R.A.). Aspects of this work were presented at the conference, “The Unmet Needs in Diagnosis and Treatment of Mood Disorders in Children and Adolescents,” October 17–18, 2000 in Washington, DC. The conference was sponsored by the National Depressive and Manic-Depressive Association through unrestricted educational grants provided by Abbott Laboratories, AstraZeneca, Bristol-Myers Squibb Company, Forest Laboratories Inc., Glaxo Wellcome Inc., The Henry Foundation, Janssen Pharmaceuticals, Eli Lilly and Company, Merck & Co., National Insitute of Mental Health, Pfizer Inc., Pharmacia, SmithKline Beecham, Solvay Pharmaceuticals Inc., and Wyeth-Ayerst Laboratories.
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Jensen PS, Bhatara VS, Vitiello B, Hoagwood K, Feil M, Burke LB (1999): Psychoactive medication prescribing practices for U.S. children: Gaps between research and clinical practice. J Am Acad Child Adolesc Psychiatry 38:557–565. Kandel DB, Davies M (1986): Adult sequelae of adolescent depressive symptoms. Arch Gen Psychiatry 43:255–262. Kaslow NH, Thompson MP (1998): Applying the criteria of empirically supported treatments to studies of psychosocial interventions for child and adolescent depression. J Clin Child Psychol 27:146 –155. Katon W, Robinson P, Von Korff M, Lin E, Bush T, Ludman E, et al (1996): A multifaceted intervention to improve treatment of depression in primary care. Arch Gen Psychiatry 53:924 – 932. Katon W, Von Korff M, Lin E, Walker E, Simon GE, Bush T, et al (1995): Collaborative management to achieve treatment guidelines: Impact on depression in primary care. JAMA 273:1026 –1031. Kelleher KJ, Hohmann AA, Larson DB (1989): Prescription of psychotropics to children in office-based practice. Am J Dis Child 143:855– 859. Kelleher KJ, Long N (1994): Barriers and new directions in mental health services research in the primary care setting. J Clin Child Psychol 23:133–142. Kogan MD, Alexander GR, Teitelbaum MA, Jack BW, Kotelchuck M, Pappas G (1995): The effect of gaps in health insurance on continuity of a regular source of care among preschool-aged children in the United States. JAMA 274:14: 29035. Kovacs M, Goldston D (1991): Cognitive and social cognitive development of depressed children and adolescents. Special section: Longitudinal research. J Am Acad Child Adolesc Psychiatry 30:388 –392. Kramer T, Garralda ME (1998): Psychiatric disorders in adolescents in primary care. Br J Psychiatry 173:508 –513. Kramer T, Gledhill J, Garralda ME, Iliffe S (1999): Identification and management of adolescent depression in primary care: Feasibility and efficacy. Paper presented at the meetings of the International Society for Research in Child and Adolescent Psychopathology. Barcelona, Spain. Lavigne JV, Arend R, Rosenbaum D, Binns HJ, Christoffel KK, Burns A, Smith A (1998): Mental health service use among young children receiving pediatric primary care. J Am Acad Child Adolesc Psychiatry 37:1175–1183. Lavigne JV, Binns HJ, Christoffel KK, Rosenbaum D, Arend R, Smith K, et al (1993): Behavior and emotional problems among preschool children in pediatric primary care: Prevalence and pediatric recognition. Pediatrics 91:649 – 655. Leaf PJ, Alegria M, Cohen P, et al (1996): Mental health service use in the community and schools: Results from the fourcommunity MECA study. Methods for the Epidemiology of Child and Adolescent Mental Disorders Study. J Am Acad Child Adolesc Psychiatry 35:889 – 897. Lewinsohn PM, Clarke GN, Rohde P, Hops H, Seeley J (1996): A cognitive-behavioral approach to the treatment of adolescent depression. In: Hibbs E, Jensen PS, editors. Psychosocial Treatment Research with Children and Adolescents. Washington, DC: American Psychiatric Association Press. Lewinsohn PM, Hops H, Roberts RE, Seeley JR, Andrews JA
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in adolescents: Clinical outcomes in adulthood. J Am Acad Child Adolesc Psychiatry 34:566 –578. Roberts RE, Lewinsohn PM, Seeley JR (1991): Screening for adolescent depression: A comparison of depression scales. J Am Acad Child Adolesc Psychiatry 30:58 – 66. Ryan ND, Puig-Antich J, Ambrosini P, Rabinovich H, et al (1987): The clinical picture of major depression in children and adolescents. Arch Gen Psychiatry 44:854 – 861. Ryan ND, Williamson DE, Iyengar S, Orvaschel H, Reich T, Dahl RE, et al (1992): A secular increase in child and adolescent onset affective disorder. J Am Acad Child Adolesc Psychiatry 31:600 – 605. Simeon JG, Dinicola VF, Ferguson HB, Copping W (1990): Adolescent depression: A placebo-controlled fluoxetine treatment study and follow-up. Prog Neuropsychopharmacol Biol Psychiatry 14:791–795. Simon G, Von Korff M, Rutter C, Wagner E (2000) Randomized trial of monitoring, feedback, and management of care by telephone to improve treatment of depression in primary care. Br Med J 320:550 –554. Stark KD, Reynolds WM, Kaslow NJ (1987): A comparison of the relative efficacy of self-control therapy and a behavioral problem-solving therapy for depression in children. J Abnorm Child Psychol 15:91–113. Sturm R (1997): How expensive is unlimited mental health care coverage under managed care? JAMA 278:1533–1537. Sturm R, Wells K (2000): Health insurance may be improving— but not for individuals with mental illness. Health Services Res 35:253–262. Szilagyi PG, Holl JL, Rodewald LE, Shone LP, Zwanziger J, Mukamel DB, et al (2000): Evaluation of children’s health insurance: From New York State’s Child Health Plus to SCHIP. Pediatrics 105(3 Suppl E):687– 691. Thompson C, Kinmonth AL, Stevens L, Peveler RC, Stevens A, Ostler KJ (2000): Effects of a clinical practice guideline and practice-based education on detection and outcome of depression in primary care: Hampshire-Depression Project randomized controlled trial. Lancet 335:185–191. U.S Department of Health and Human Services, Health Care Financing Administration. State Child Health: Implementing Regulations for the State Child Health Insurance Program, Final Rule. Washington, DC: U.S. Department of Health and Human Services, Health Care Financing Administration. U.S. Preventive Services Task Force (1996): Guide to Clinical Preventive Services, 2nd ed. Washington, DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Von Korff M, Katon W, Bush T, Lin E, Simon GE, Saunders K, et al (1997): Treatment costs, cost offset and cost-effectiveness of collaborative management in depression. Psychosom Med 60:143–149.
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Von Korff M, Tiemens B (2000): Individualized stepped care of chronic illness. West J Med 172:133–137. Wagner EH, Austin BT, Von Korff M (1996): Organizing care for patients with chronic illness. Milbank Q 74:511–544. Weissman MM, Olfson M, Feder A, Pilowsky D, Gameroff M (2000): Problems with children in depressed mothers coming to primary care. Paper presented at the annual meeting of the American Academy of Child and Adolescent Psychiatry. New York. Weisz JR, Thurber CA, Sweeney L, Proffitt VD, LeGagnoux GL (1997): Brief treatment of mild-to-moderate child depression using primary and secondary control enhancement training. J Consult Clin Psychol 65:703–707. Wells KB (1999): Treatment research at the crossroads: The scientific interface of clinical trials and effectiveness research. Am J Psychiatry 156:5–10. Wells KB, Manning WG Jr, Valdez RB (1990): The effects of a prepaid group practice on mental health outcomes. Health Services Res 25:615– 625. Wells KB, Sherbourne C, Schoenbaum M, Duan N, Meredith L, Unu¨tzer J, et al (2000): Impact of disseminating quality improvement programs for depression in managed primary care: A randomized controlled trial. JAMA 283:212–220. Wells KB, Stuart A, Hays RD, et al (1989): The functioning and well-being of depressed patients: Results from the Medical Outcomes Study. JAMA 262:914 –919. Wells KB, Sturm R, Sherbourne DC, Meredith LS (1996): Caring for Depression. Cambridge, MA: Harvard University Press. Wissow LS, Roter DL, Wilson ME (1994): Pediatrician interview style and mothers’ disclosure of psychosocial issues. Pediatrics 93:289 –295. Wood A, Harrington R, Moore A (1996): Controlled trial of a brief cognitive-behavioral intervention in adolescent patients with depressive disorders. J Child Psychol Psychiatry 37: 737–746. Wu P, Hoven CW, Bird HR, Moore RE, Cohen P, Alegria M, et al (1999): Depressive and disruptive disorders and mental health service utilization in children and adolescents. J Am Acad Child Adolesc Psychiatry 38:1081–1090. Young AS, Klap R, Sherbourne CD, Wells KB (2001) The quality of care for depressive and anxiety disorders in the United States. Arch Gen Psychiatry 58:55– 61. Zahner GEP, Daskalakis C (1997): Factors associated with mental health, general health, and school-based service use for child psychopathology. Am J Public Health 87:1440 – 1448. Zahner GEP, Pawelkiewicz W, DeFrancesco JJ, Adnopoz J (1992): Children’s mental health service needs and utilization patterns in an urban community: An epidemiological assessment. J Am Acad Child Adolesc Psychiatry 31:951–960.
Introduction
T
his article examines the role of primary care practices in addressing unmet need for treatment of child and adolescent affective disorders and considers some practice and policy solutions to address unmet need. Further, while services research on children and adolescents with affective disorders is generally limited, it is especially undeveloped for bipolar disorder. Therefore the perspective in this article is primarily shaped by more general literature on care for children with mental health problems and studies of adults with affective disorders. Development of From the Department of Psychiatry (KBW, SHK, JRA) and Biobehavioral Sciences, University of California, Los Angeles, California; and the Robert Wood Johnson Clinical Scholars Program (SHK). Address reprint requests to Kenneth B. Wells, MD, MPH, Professor of Psychiatry and Director, UCLA Health Services Research Center, 10920 Wilshire Boulevard, Suite 300, Los Angeles, CA 90024-6505. Received November 11, 2000; revised February 5, 2001; accepted February 7, 2001.
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a comprehensive services research literature that spans clinical epidemiology and clinical and policy intervention research on children and adolescents with affective disorders should be a high research priority.
Impact and Appropriate Treatment of Affective Disorders in Youths Affective disorders are leading causes of disability worldwide and impose substantial health and economic burdens on individuals, families, and communities (Murray and Lopez 1996; Wells et al 1996). One reason for the high associated disability is that, unlike many chronic illnesses that primarily affect older adults, affective disorders are prevalent across the life span. In particular, roughly 20% of U.S. youth may experience a depressive episode by the age of 18 years (Lewinsohn et al 1993), and bipolar disorder commonly begins in adolescence or early adulthood (McClellan and Werry 1997). Affective disorders are major risk factors for suicide, a leading cause of death in adolescents (National Health Care Statistics 1995). Youth with affective disorders may develop dysfunctional patterns that persist through adulthood, reducing productivity. For example, depression in youth is associated with poor social functioning, decreased school performance, increased risk for drug and alcohol use, and nicotine dependence (Asarnow and Ben-Meir 1988; Hammen 1990; Kandel and Davies 1986; Kovacs and Goldston 1991; Rao et al 1995; Ryan et al 1987). Evidence that depression is increasing in prevalence and that age of onset is declining enhances the importance of developing accessible, effective service delivery systems for children and adolescents (Gershon et al 1987; Lewinsohn et al 1993; Ryan et al 1992). Treatments of probable efficacy have been identified for youth with affective disorders, especially for adolescents, and practice guidelines based on this evidence and clinical consensus have been formulated. Practice guidelines for youth depression include psychotherapies, such as cognitive behavioral therapy (CBT) and interpersonal psychotherapy (IPT), and psychopharmacological treatment (Birmaher and Brent 1998; Hughes et al 1999; Kaslow and Thompson 1998). There is some evidence that brief, 0006-3223/01/$20.00 PII S0006-3223(00)01113-1
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structured psychotherapy may be efficacious in young children with symptoms of depression (Jaycox et al 1994; Stark et al 1987; Weisz et al 1997); however, replication of these studies is needed. Cognitive behavioral therapy appears to be effective in adolescents with either depressive disorder or with depressive symptoms but no current disorder, and it may reduce incidence of major depression in adolescents who have parents with an affective disorder (see Asarnow et al in press; Clarke et al 1995; Lewinsohn et al 1996; Wood et al 1996). Limited evidence is available for the short-term safety and efficacy of selective serotonin reuptake inhibitors (SSRIs) for the treatment of child and adolescent depression (Emslie et al 1997; Jensen et al 1999; Simeon et al 1990). For bipolar depression, practice guidelines conclude that the only specific treatment for youth bipolar disorder is medication therapy using a mood stabilizer and that care must be taken in using antidepressant agents (McClellan et al 1997). As with unipolar depression, it is recommended that bipolar youth receive psychosocial interventions, but this is primarily based on adult studies.
Unmet Need for Child Mental Health Care Despite availability of these guidelines, most children and adolescents with an affective disorder may not receive appropriate treatment. Unlike information available from adult studies, there are no national data describing access to appropriate care for representative children and adolescents with affective disorders (Wells et al 1996; Young et al 2001). Yet the literature suggests that less than half of those children and adolescents with more broadly defined mental health need receive any mental health services (Leaf et al 1996; Offord et al 1987; Zahner et al 1992).
Primary Care and Treatment of Child Mental Disorders Primary care settings could represent an important opportunity to address unmet need for treatment of child and adolescent affective disorders. The majority of children and adolescents have some contact with a general medical provider within the course of a year, if only for well-child visits or school physicals. For example, 70% of youth between 10 and 18 years of age visit primary care providers in a year, averaging three visits per year (Gans et al 1991; Monheit et al 1992). Thus, primary care offers some promise as a site for intervention with children who have affective disorders. Despite the promise of primary care settings for improving access to treatment for affective disorders in youth, studies suggest that when children and adolescents receive mental health care, it is usually provided through schools
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and mental health specialists, rather than by primary care providers (Burns et al 1995). Thus it is unlikely that primary care is currently filling much of the gap in unmet need for mental health care generally, or by implication for affective disorder treatments. For example, Burns et al (1995) found that the school system was the sole provider of services for nearly half of children with serious emotional disturbances. Among youth who received services and had a diagnosis and impaired functioning, roughly 70% received services from schools, about 40% received services in the specialty mental health sectors, and smaller groups of youth received services within the child welfare sector (about 16%), the juvenile justice sector (roughly 4%), and in the general health sector (about 11%); however, these findings may underestimate the level of mental health care actually received in primary care, because these data were based on parent report and not on records, such as medication prescriptions. Provision of mental health treatments within primary care is commonly conceptualized as including clinician detection of mental disorder, initiating and monitoring treatment, such as medication or counseling or therapy or both, and referral to or coordination with specialty care providers (Wells et al 1996). These components of treatment occur within a patient/family provider relationship and overall clinical management strategy that also addresses other health and development issues, including compliance with recommended treatments. Further, these individual care issues occur within a broader practice context that is shaped by needs of other patients, and characteristics of clinicians, practice settings, and health systems (McGlynn et al 1988). A health services research perspective of care for youth affective disorders in primary care potentially includes the provision of treatments, the care relationships, the clinical management strategies, and the contextual factors, including issues such as insurance coverage. Current studies indicate that pediatricians identify mental health need in only 1%–16% of children, but 17%–27% of children in primary care may have a need for services (Briggs-Gowan et al 2000; Costello et al 1988a,b; Horwitz et al 1992; Lavigne et al 1998; Pagano et al 2000). More clinically precise studies of detection of specific affective disorders in primary care have been conducted with adults and confirm moderate to low rates of detection with some greater problems in detection under prepaid care (Attkisson and Zich 1990; Wells et al 1996). Kramer and colleagues similarly found low rates of detection and treatment of depressive disorders among adolescents in primary care in the United Kingdom (Kramer and Garralda 1998; Kramer et al 1999). Similar studies of adolescents are in the field in the United States (Asarnow et al 2000; Roberts et al 1991).
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The feasibility of screening for child psychosocial problems has recently been demonstrated in geographically diverse primary care practice settings, using the Pediatric Symptom Checklist (Jellinek et al 1999); however, widespread use of such screening measures requires evidence of acceptability to parents, children, and providers as well as data on effectiveness in affecting health outcomes and cost-effectiveness. For example, the U.S. Preventive Task Force (1996) has concluded that there is insufficient evidence for routine depression screening in primary care. In adults, prior studies failed to show much impact on quality of care or outcomes of screening and screening feedback to clinicians in the absence of a more comprehensive intervention framework that addresses treatment and the care management context (Attkisson and Zich 1990). More specifically, although detection of an affective disorder by a primary care provider may be an important first step to treatment, the aspect of care that affects patient outcomes is whether patients are provided with and utilize clinically appropriate care for their conditions. But, rates of appropriate treatment for affective disorders in primary care settings appear to be moderate to low. For example, Horwitz et al (1992) found that only 56% of children and adolescents detected as having a mental health problem by their primary care provider received any intervention. Further, the mental health services that are commonly provided to children in primary care settings may not be effective in treating child and adolescent depressive disorders. The average pediatric visit is roughly 10 min (Chang et al 1988), which limits the feasibility of evaluation and treatment within primary care without additional resources or referral. Studies suggest that mental health services in pediatric settings include supportive counseling (Costello 1986), for which there is no efficacy data in affective disorders (Kelleher and Long 1994); psychotropic medications (Kelleher et al 1989), for which effectiveness in these settings is largely unknown (Kelleher and Long 1994); and specialty referral. Rates of specialty referral from primary care settings vary across studies from 9%– 42% (Goldberg et al 1984; Lavigne et al 1993), but only one half of children recommended for a referral actually receive specialty care (Goldberg et al 1984; Lavigne et al 1993). Not surprisingly, average outcomes for children and adolescents with mental health problems in primary care are poor (Burns 1996).
Barriers to Detection and Appropriate Treatment in Primary Care These low rates of detection and appropriate care for mental disorders within primary care settings increase the importance of understanding the barriers to appropriate
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care, so that interventions can be designed to reduce those barriers and enhance opportunities for evidence-based mental health treatment. Studies of predictors of detection of mental disorders in children and of detection and provision of appropriate care for adults with affective disorder in primary care suggest that many factors may contribute to unmet need, as discussed below.
Child Characteristics Individual characteristics such as gender can affect detection of mental health problems, with clinicians more likely to detect these problems in boys than girls (Horwitz et al 1992). Among preschool children who received primary care and also had mental health need, older, white, and more impaired children had more mental health service use (Lavigne et al 1998). Further, unmet need for child mental health care may be higher among ethnic minorities and the uninsured (Department of Health and Human Services 1999), although studies of this issue have reached conflicting conclusions (Burns et al 1997; Glied et al 1997; Padgett et al 1993; Pumariega et al 1998; Zahner et al 1997).
Parental Characteristics Parental factors such as lack of recognition of the child’s problems or not communicating concerns to the provider can play a role in detection and treatment (Briggs-Gowan et al 2000; Hickson et al 1983). Parents are less likely to perceive a need for their child getting treatment if the child is depressed compared to having a disruptive disorder, although depressed children perceive more of a need for care than do children with disruptive disorders (Cantwell et al 1997; Wu et al 1999). Adult studies suggest that minorities, especially African Americans, are less likely to receive appropriate care for depression (Young et al 2001). In addition, parents who themselves have a mental health problem, such as depression, and who have a history of treatment, are more likely to have children who receive mental health services. This association may not only be due to the increased risk for psychiatric disorders in children of affectively ill parents (Beardslee et al 1998; Canino et al 1990; Hammen et al 1990) but also to greater parental familiarity with services, receptivity to seeking help, or a tendency for parents with mental health problems to report higher rates of problems in their children (Canino et al 1990). Financial constraints may also limit parent’s ability to obtain services for their child.
Clinician and Clinician–Patient Relationship Factors. Adult studies suggest that clinician knowledge and attitudinal factors, such as perceived skill, affect proclivities to
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detect and treat affective disorders (Meredith et al 1999). In child primary care settings, physician characteristics, such as being female, use of the DSM-IV, and use of psychosocial interview techniques, have been associated with the clinician being more attuned to the mental health concerns of patients (McLennan et al 1999; Wissow et al 1994). In primary care, visits are often brief and there are many competing demands for providers’ attention (Chang et al 1988). For example, Horwitz et al (1992) found that physicians were more likely to detect psychosocial problems during well-child as opposed to acute-care visits. Improving detection and treatment for affective disorders in youths is complicated by the diversity of clinicians that deliver care to youth, which includes pediatricians, adolescent medicine specialists, general and family practitioners, internists, gynecologists, and nurse practitioners and physician assistants. Children of different developmental stages typically have different mixes of providers within and across practice environments. Younger children, for example, may be more likely to regularly visit the same pediatrician, whereas older children and adolescents may visit less frequently and transition from pediatricians to adolescent medicine specialists to clinicians in other fields, such as family medicine, internal medicine, gynecology, or school-based health services. Detection and treatment is further complicated by a host of healthcare delivery and financing and organizational characteristics. These include lack of insurance coverage, limited insurance coverage, fiscal and organizational separation of services for physical, mental, and substance abuse disorders, and limited practice infrastructure for supporting integrated care with specialty providers (e.g., absence of therapists on site in primary care). Primary care providers may receive relatively limited coverage for providing psychotherapy or other mental health services, and in some plans may not be covered at all for most mental health services; yet child mental health specialty providers may not be available. Features of managed care may also affect access to care and intensity, and possibly appropriateness of services. One adult study found lower rates of detection of depression for prepaid than for fee-for-service patients, but this was before widespread implementation of managed care policies (Wells et al 1989). Generally for children and adolescents, staff-model health maintenance organizations lead to similar or high rates of mental health care but lower intensity and cost of services, compared to comparable unmanaged fee-forservice plans (Manning et al 1987; Wells et al 1990); however, most studies predated current fee-for-service plans that utilize some managed care strategies, such as preauthorization or utilization review. Impacts of these specific managed care strategies have not been evaluated
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for children with affective disorders and their effects on health outcomes of care are unknown even for adults. The widespread implementation of so-called “carveouts,” distinct behavioral health specialty management companies to manage benefits for both children and adults, poses other challenges (Gresenz et al 1998). Although access to some mental health care may have improved under some carve-outs (Goldman et al 1998), implementation of carve-outs is more difficult for children because of the low supply for child behavioral health providers. This may lead to greater reliance on adult specialty providers without training in care of children for delivering treatments for affective disorders or supporting primary care clinicians in doing so. Further, with mental health benefits managed through carve-outs, primary care providers may have less incentive to directly provide mental health services. On the other hand, in integrated health care systems, primary care providers may serve as gatekeepers to specialty mental health services (Martin et al 1989). This may be especially problematic for care of youths with affective disorder because of the more limited experience of primary care providers in evaluating and treating such patients. The diversity of organizational and financing arrangements in primary care practices suggests that there can be no one policy or healthcare system solution to the problem of unmet need for appropriate care for youth affective disorders in primary care or generally. Rather, diverse solutions may be needed across different practices depending on which mix of primary care and specialty clinicians are involved in youth affective disorder care, their ongoing relationships, and their training in child mental health care.
Finding Policy Solutions to Unmet Need: Coverage for the Uninsured and Parity for the Insured Two proposed policy solutions to system barriers, extending coverage to the uninsured and parity of coverage for mental and physical disorders among the insured, have been the subject of intense policy debate and legislation, so we provide additional discussion of their relevance to youth with affective disorders. These solutions to system barriers are echoed in a recent consensus statement by the American Academy of Pediatrics, in collaboration with the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatrists, and the American Psychological Association among others, which advocated for improvement in child mental health insurance coverage (American Academy of Pediatrics 2000). Uninsurance places children at risk for decreased access to primary care and potentially mental health services
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(Burns et al 1997; Holl et al 1995; Kogan et al 1995). Although rates of uninsurance in general have remained unchanged for adults, those adults with mental disorders, including affective disorders, have continued to have increasing uninsurance (Sturm and Wells 2000). One recent expansion of public health insurance for children has been the State Children’s Health Insurance Program (SCHIP), established in 1997 under the Balance Budget Act. The SCHIP makes federal grants available to states to provide health insurance targeting low-income uninsured children who do not quality for Medicaid. States have flexibility in developing a program that either expands the existing Medicaid program, creates a new program, or is a combination of both; however, mental health services are considered “additional” benefits and substance abuse services “optional” benefits under SCHIP (U.S. Department of Health and Human Services). Consequently SCHIP mental health benefits across states have varied in the type of disorders covered, copayments required, and types of services included. One of the earliest programs, New York’s Child Health Plus (CHPlus) Program, resulted in a substantial increase in utilization of primary care services but not specialty services (Szilagyi et al 2000). An urgent research priority is to understand how the implementation of SCHIP across multiple states has been affecting unmet need for youth mental health care, if at all, and the impact of access to mental health care through primary care and school settings, the only settings in which many lowerincome youth receive any care. The second proposed solution is parity, or state or federal laws that mandate equivalent coverage for mental health and physical health conditions. Such laws may be particularly important for youths, who tend to have higher costs when they do receive mental health care than do adults, and thus more commonly exceed coverage limits (Sturm 1997); however, parity laws may have limited impact if they concern only a portion of benefit terms, such as dollar coverage limits, or if at least some mental health coverage is not mandated. Evaluations of the impact of federal as well as state parity laws have primarily focused on adults rather than children and tend to show little if any effect of such laws on costs or use of mental health services (Sturm 1997; Pacula and Sturm 2000). Burnam and Escarce (1999) point out that parity of defined benefits may have relatively little meaning in the current managed care environment, and a more relevant concept is equity of coverage when both defined benefits and management policies are considered. This is an important direction for further policy development and research in addressing unmet need for care for youth affective disorders, across primary care and specialty care settings. Thus, although achieving some minimal coverage for
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uninsured youth with affective disorders may require more systematic implementation and standardization of benefits under programs such as SCHIP, achieving more comprehensive coverage for children in the private healthcare sector may well require tougher mandates that result in equity of opportunities for care based on benefits and employment of management strategies, as well as required inclusion of mental health coverage.
Finding Practice-Based Solutions: Implementing Quality Improvement Programs Quality improvement programs are interventions that increase opportunities for appropriate care, through providing training and resources to patients and providers, and system restructuring. There are diverse approaches to quality improvement, but we refer to implementation of evidence-based practice guidelines following a chronic disease management model, such as the collaborative care model (Katon et al 1995, 1996; VonKorff et al 1997). The collaborative care model for chronic illness outlined by Wagner et al (1996) and VonKorff et al (1997) and adapted for depression care by Katon et al (1995) and VonKorff and Tiemens (2000) provides a framework for population-based management of depression. The key components are: 1) case findings and outreach to individuals at risk for chronic disease; 2) consumer activation and self-management support to achieve sustainable, appropriate care; 3) provider education and decision support based on evidence-based practice guidelines; 4) structural changes in the delivery of care that facilitates fulfilling roles and accountabilities defined for a collaborative team, that supports care for depression at each essential step in care; 5) the use of information systems to support proactive follow-up and outcomes tracking; 6) care management to link services and support initiation of and adherence to evidence-based treatments; 7) consultation from mental heath specialists for patients whose depression is complex and difficult to treat; and 8) effective linkage with community agencies. Quality improvement models based on this framework commonly support education and activation of patients and/or families, integrate and coordinate care and facilitate follow-up and adherence through a care manager such as a trained nurse, support primary care clinician education, and use various strategies to support provision of guideline-concordant care through collaboration with specialty providers. For example, those providers may provide direct patient consultation, training sessions for providers, and supervision of primary care staff. Such models have been implemented extensively in studies of quality improvement for adults with affective
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disorder in primary care settings. In general, studies that have implemented most components of the collaborative care model for chronic disease tended to demonstrate positive effects on quality of care and outcomes (Katon et al 1995, 1996; Wells et al 2000). Recent studies using models that require fewer resources but still preserve the use of ancillary staff also reported improved outcomes (Hunkeler et al 2000; Simon et al 2000); however, some studies have negative findings, especially studies that rely primarily or exclusively on provider education rather than employing care managers or broader practice change strategies, such as patient education or activation, reductions in copayments, etc. (Brown et al 2000; Thompson et al 2000). It is premature to draw conclusions about which quality improvement strategies and underlying disease management models lead robustly to improved quality of care and outcomes for adult affective disorder in primary care. But a range of strategies seems to be effective, even when flexibly implemented by managed care practices themselves rather than by the research team (Wells et al 2000). Further, impacts can reach beyond clinical improvement and include quality of life as well as increased employment stability (Wells et al 2000). Thus, these interventions have potential to decrease the societal burden of affective disorders from reduced productivity, as well as being cost-effective from a more limited plan or practice perspective for sicker patients (Von Korff et al 1997). A quality improvement study for youth depression in primary care following the collaborative care model of chronic disease is currently in the field (Asarnow et al 2000). Other studies that evaluate efforts to improve care for depression within primary care clinics (Clarke et al 2000) and school-based clinics (Mufson and Dorta 2000) are also in progress. Kramer et al (1999) found that training general practitioners to use a screening and management guide for adolescent depression led to improved detection and some treatment for depression within the general practitioner visit. When adolescents received treatment within the visit, 92% of adolescents found it helpful. Weissman et al (2000) found that screening adult primary care patients for depression as well as emotional problems in their offspring may have promise as an early detection and intervention strategy for children. There are particular challenges with modifying quality improvement interventions for younger age groups. As demonstrated by the studies cited above, implementing quality improvement programs that reach children may require treating multiple generations and coordination across different agencies, such as schools and health providers. Another challenge is the early stage of development of the efficacy literature, such that the evidence basis for practice guidelines is not as certain as for adult
depression, for example. Conveying this uncertainty in a manner that is clinically useful within a real-world quality improvement program is challenging, especially given the different levels of maturity of the literature across age groups and different types of affective disorder. Further, because the most established psychosocial treatments for adolescents are structured psychotherapies, particularly CBT and IPT, a particular challenge to implementing meaningful quality improvement interventions in either primary care or specialty care is the limited availability of empirically validated psychotherapies for youth and lack of accountability in community settings for the form of psychotherapy provided. For example, it would be difficult for a primary care provider to know the form of therapy provided under a referral to a specialist, or whether CBT, if available, is implemented similarly to the protocols in efficacy studies. The problem of provision of verifiable psychotherapy for youth affective disorders touches on problems of availability of services, manpower distribution, accountability, and practice structure. Generally, as efficacy studies develop and as practice guidelines become more widely available for child and adolescent mental disorders, it will become more feasible to evaluate the impact of implementing these guidelines through quality improvement programs, or models of service delivery based on evidence-based practice guidelines. Evaluations of quality improvement programs usually require design and analysis strategies that depart substantially from the traditional randomized controlled trial (Wells 1999). These programs usually are implemented in community settings without masking or blinding and employ quasi-experimental designs, utilizing usual care providers and typical patients with a range of comorbidities. Analyses require careful statistical control for differences in compared patient groups due to selection, particularly if randomization is not used or randomization occurs at a group or practice level. Thus, the development of this research agenda within child and adolescent mental health services research may require strategies to disseminate some of these methodologies.
Discussion Although most children and adolescents have some general medical care in a year, typically this does not include mental health care or if it does, that care may be unlikely to be clinically appropriate for youth affective disorders. As a result, it is likely that depressed children and adolescents receive very little care that would be considered concordant with recommended treatments in primary care. A particular problem is the availability of appropriate psychotherapy within primary care settings, even though this is frequently the preferred initial treatment option for
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many youth. The relative lack of child mental health specialists increases the importance of training both adult mental health specialists and children and adolescent primary care providers in appropriate first-line treatment of depression in this age group; however, adult studies suggest that provider training alone is probably insufficient to achieve higher rates of care, and more sophisticated quality improvement interventions are likely to be needed. The question of whether quality improvement intervention strategies that are effective for adults with affective disorder hold a similar promise for youth with affective disorders should be one of the exciting areas of practice intervention research in the next decade. For youth, with many years of future life to be lived, impacts on quality of life and productivity may hold particular promise for reducing the societal burden of affective disorder over the life span. This implies a rigorous, longitudinal research agenda within primary care settings to develop the interventions, evaluate broad individual, family, and societal impacts, and address issues of sustainability and dissemination. Given the diversity of specialists and relationships among specialists caring for children and adolescents with affective disorder, and the diversity of primary care practice environments, these interventions should be designed to either be robust across practice settings and providers, for example by permitting flexibility in how the interventions are tailored to particular specialists or practice configurations, or should be targeted through a segmented research strategy to particular types of specialists or practice settings. The adult literature suggests that quality improvement interventions for depression in primary care that were initially developed and tested within one type of practice setting (i.e., more integrated, managed, private practices) can also be effective when subsequently applied flexibly across diverse settings (i.e., that include network model practices as well as public sector settings) (Katon et al 1996; Wells et al 2000). Sustained change in practice that delivers appropriate care to most youth with affective disorder is likely to require not only quality improvement within existing settings but development of supply of appropriate providers through education and training, and other system of care changes, such as improved coordination between specialty and primary care providers, and development of practice infrastructure to include and support ancillary staff necessary for disease management. Further, a rigorous research program is needed to identify cost-effective strategies that span quality improvement and manpower and infrastructure investment to achieve sustainable change in access to appropriate care for youth affective disorders. Achieving these deeper changes in practice structure
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and function may require policy changes, particularly more effective formulation and implementation of insurance coverage mandates that state and federal agencies have already initiated. We have particularly focused on the need for mandated, tough parity laws in the private sector, and implementing increased coverage more universally within and across states for uninsured children. Achieving the leverage to meet these goals is likely to require a high degree of consumer activity and advocacy, as well as improved research studies and findings that help identify the appropriate treatments, practice service delivery mechanisms, and public policies, and their consequences for unmet need, costs, and outcomes.
Supported by the National Institute of Mental Health (NIMH)–Research Center on Managed Care for Psychiatric Disorders Grant (MH546230) (all authors); The Robert Wood Johnson Clinical Scholars Program (Grant number 037098) (K.B.W., S.H.K.); and the Agency for Healthcare Research and Quality (AHRQ)–Youth Partners in Care Grant (HS09908) (K.B.W., J.R.A.). Aspects of this work were presented at the conference, “The Unmet Needs in Diagnosis and Treatment of Mood Disorders in Children and Adolescents,” October 17–18, 2000 in Washington, DC. The conference was sponsored by the National Depressive and Manic-Depressive Association through unrestricted educational grants provided by Abbott Laboratories, AstraZeneca, Bristol-Myers Squibb Company, Forest Laboratories Inc., Glaxo Wellcome Inc., The Henry Foundation, Janssen Pharmaceuticals, Eli Lilly and Company, Merck & Co., National Insitute of Mental Health, Pfizer Inc., Pharmacia, SmithKline Beecham, Solvay Pharmaceuticals Inc., and Wyeth-Ayerst Laboratories.
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