Barriers to Health Care Research for Children and Youth With Psychosocial Problems FREE

The 1999 surgeon general's report on mental health¹ concluded that state-of-the-art treatment for mental disorders is not being translated or disseminated into clinical practice, particularly for certain groups such as children, and that more emphasis is needed on research regarding the identification and treatment of mental health issues in primary medical care. This recommendation is based on the recognition that large numbers of children have mental health problems but few receive services for these problems and the knowledge that primary care clinicians are one of the major providers of mental health services to children and adolescents.² Primary care clinicians identify significant numbers of children with behavioral or emotional problems, and most psychotropic drug prescriptions to children and adolescents are prescribed by primary care physicians.^2- 4

The prevalence of psychosocial problems in children visiting pediatric primary care practices was first identified by Haggerty et al⁵ in 1975 and described as the new morbidity. The central role of primary care physicians in providing mental health services was recognized as early as 1978 by investigators at the National Institute of Mental Health (NIMH). Regier and colleagues⁶ called the primary medical care system the de facto mental health care system for most individuals with mental health disorders in the United States. They further contended that children and elderly patients were most likely to receive treatment from primary care physicians for symptoms associated with mental disorders.⁷ Reports^2,4,8- 9 since that time have continued to document the large and growing role that primary care clinicians play in the identification and treatment of children and adolescents with mental disorders.

Recognizing the key role primary care clinicians have in identifying and treating mental disorders, NIMH and other federal agencies have incorporated an emphasis on primary care in their research planning documents for children and adolescents. In 1989, an Institute of Medicine report¹⁰ called for more emphasis on primary care–based research on pediatric mental disorders. This call was echoed in the 1990 National Plan for Research on Child and Adolescent Mental Disorders, which stated: "Most children with mental disorders are not seen by mental health specialists. Thus, study of the quality of mental health services delivered in routine health care is critical." A key recommendation from that report reads: "[A]t present, little information is available about how primary care providers recognize, diagnose and treat mental illness in children and adolescents."¹¹

An influential 1998 report¹² argued that the portfolio of research needed to be expanded, especially in the areas of effectiveness, practice, and service systems research. This document specifically underscored the dearth of information on care in routine settings.

The emphasis on understanding the practice of primary care, particularly as it relates to the mental health of children, is also evident in the planning and priorities documents of the Agency for Healthcare Research and Quality (AHRQ). When AHRQ was established in 1989 as the Agency for Health Care Policy and Research, an effectiveness initiative was a cornerstone of its mission. In a report,¹³ the agency concluded that a critical area for future emphasis was practice change for the improvement of care. Interestingly, of the 46 research projects included in the AHRQ outcomes portfolio, only 5 targeted children, and only 2 of these 5 addressed primary care. In December 1999, AHRQ declared children a priority area and in June 2000 published priority areas that included research in primary care settings for children.¹⁴

We sought to assess the extent to which these federal research agencies' portfolios of funded grants were consistent with the significant attention to primary care–based research on mental health services for children and adolescents referred to in their planning documents. To accomplish this objective, we undertook a comprehensive review of the research portfolio of the US Department of Health and Human Services, including the National Institutes of Health, to determine what proportion of the current research portfolio addresses behavioral and emotional issues in pediatric primary care settings.

We searched the 66 749 abstracts listed in the April 2001 Computer Retrieval of Information on Scientific Projects (CRISP) database of currently funded biomedical research projects supported by the Department of Health and Human Services. Funding agencies include the National Institutes of Health, Centers for Disease Control and Prevention, Food and Drug Administration, Health Resources and Services Administration, and AHRQ. All searches and classifications of the content of the research abstracts were completed twice by one of the investigators (S.M.H.) and a research associate to ensure accuracy. By using the search utility available in CRISP, research abstracts were first searched for the keywords children, adolescents, and youth. Abstracts were searched a second time by combining the words children and primary care, adolescents and primary care, and youth and primary care. The CRISP search utility queries project abstracts for the terms of interest.¹⁵ Since the searches were completed by using the same words, there were no disagreements. The abstracts of all projects with the keywords children, adolescents, youth, and primary care were printed and reviewed by the investigator. Abstracts were rated according to whether they targeted primary care, examined behavioral or emotional issues, and examined or modified a facet of primary medical care, rather than simply using primary care as a subject recruitment site.

Of the 66 749 abstracts in the April 2001 CRISP database, 45 022 (67.4%) were designated as research. Of these, 2720 (6%) contained the words children, adolescents, or youth. When we searched for the words children, adolescents, or youth and primary care, we identified 205 unduplicated abstracts, representing 0.5% of the Department of Health and Human Services research portfolio and 7.5% of the research on children and adolescents. Careful searching of these 205 abstracts revealed that only 63 represented research on children, adolescents, and youth and primary care. Ten of the abstracts studied adults in primary care, and the remaining 132 contained the words primary or care but did not have primary care as their subject matter. Thus, only 0.1% of the entire research portfolio examined children, adolescents, or youth and primary care, and only 2.3% of the federally funded research on children, adolescents, or youth is dedicated to this area (Figure 1).

Portions of the portfolios dedicated to research on children, adolescents, and youth and to research on children, adolescents, and youth and primary care varied significantly among the 24 institutes and agencies that listed funded research in the April 2001 CRISP database, although all institutes funded some research on children (Table 1). As might be expected, the National Institute for Child Health and Human Development had the largest proportion of the portfolio dedicated to children (432/2061, or 21.0%), whereas the National Institute of General Medical Sciences (25/5348, or 0.5%) and the Human Genome Project (4/234, or 1.7%) had the least. Far fewer institutes funded research involving primary care and children. Thirteen (54%) of the 24 funding agencies listed in Table 1 funded no research on children, adolescents, or youth and primary care, whereas 4 agencies funded 69.8% of all research in this area. Only the AHRQ and the National Library of Medicine funded more than 1% of their portfolios in this area.

Of the 63 abstracts that examined children, adolescents, or youth and primary care, 21 projects (0.05% of the CRISP research portfolio) addressed behavioral or emotional issues. Eleven of these 21 projects are funded by NIMH, 6 are funded by the National Institute for Alcohol Abuse and Alcoholism, 2 are funded by AHRQ, and 1 each is funded by the National Institute on Drug Abuse and the National Institute of Child Health and Human Development. The 11 studies represent only 0.41% of NIMH's portfolio. Furthermore, only 5 of the 6 projects funded by the National Institute on Alcohol Abuse and Alcoholism represent a body of work focused on usual practice. Most of the remaining 15 projects simply use primary care as a venue for recruiting subjects to test a therapeutic intervention.

To put these findings in a comparative perspective, we examined the distribution of child and adult studies on a mental health issue that has received widespread national attention, the treatment of depression within primary care settings. We found that only 6 (5.8%) of the 103 research abstracts on this topic had children and youth as their subjects, even though depression commonly has its onset in adolescence, and children and youth constitute approximately 26% of the total population.

Federal agencies' planning documents devote considerable attention to the need to understand the identification and treatment of children's behavioral and emotional issues within primary medical care settings. Nevertheless, we could find little evidence that such attention has resulted in aggressive programs of research in this area. In fact, of a mere 63 grants examining children and adolescent issues in primary care, only 21 (0.05%) found in the CRISP research database involve studies of behavioral and emotional issues in primary care. Even in the institutes with the largest number of these studies, this research represents less than 1% of all portfolio projects funded. Even more important, according to the content of the abstracts, few examined or attempted to modify usual practice. Considerable work in adults shows that care for a prevalent mental health problem, such as depression, can be provided in the primary care setting, but without appropriate incentives, innovative care models are not maintained.¹⁶

To understand whether it was children's mental health issues in primary care or children's mental health issues more generally that were underrepresented, we performed an additional review. We examined the distribution of child or adolescent and adult studies on a mental health issue that has received attention, the treatment of depression within primary care settings. We chose this topic as the most likely of the major mental health problems to be coded under a single term across the life span. We found that only 6 (5.8%) of 103 research abstracts on this topic had children or adolescents as their focus. On a topic that is important in children, adolescents, and adults, adults receive more than 15 times the research attention compared with children. These sobering findings—the mismatch between children's mental health needs, the good intentions expressed by all, and the consistent failure to close these health and health care research gaps between children and adults—have been noted before. The authors of the 1989 Institute of Medicine report on NIMH's research on children examined the interim progress in 1994; they concluded that although some gains had been made in some areas, the gaps across all research areas had not been appreciably closed.¹⁷

As with all work, this project has certain limitations. The search for keywords within research abstracts produces research that has nothing to do with the topic of interest, particularly when the search term can be used in other phrases. Consequently, these figures can be considered only rough estimates of the quantity of research on the topic of interest, children and primary care. Similarly, this review counted only the number of grants funded by federal agencies as an indication of research activity in the field. Other measures could be used, such as federally funded publications, the number of applications for funding, or total grant dollars. More important, we have no way of knowing how the grants that were funded reflect the pool of submitted applications. Thus, we have little information about whether projects in this area are not being submitted or are being submitted and unfavorably reviewed.

Nevertheless, we conclude that despite more than 20 years of recognition of the importance of primary care as a system for identifying and treating behavioral and emotional problems in children, little attention is being paid to this topic in the research portfolios of the National Institutes of Health and other federal agencies that support research. Given the recent call by the surgeon general and the explicit recommendation to build a mental health capacity within the primary medical care system, this failure is ironic and tragic.

Without an understanding of the opportunities and barriers that face physicians confronted with these and a host of other important issues, primary care will remain an underused venue for providing mental health services to children. Developing knowledge of the capacity for change in primary care necessitates creating a well-planned research agenda that builds knowledge in an orderly fashion and implementing it. Prior calls from research agencies have not been supported by specific announcements, review considerations, and other mechanisms that have helped other important issues significantly expand their research presence. Although these data point to a disconnection between agencies' directives for the development of research that examines primary care–based mental health services and their research portfolios, understanding the reasons for this discrepancy will require a careful examination by the various agencies. Identifying whether adequate workforce is available, sufficient applications are submitted in response to requests for proposals, and review committees have experts in children's mental health services research will be critical for the development of solutions. Without a targeted effort to change the agenda, the research incentives, and the review process, we are unlikely ever to understand the capacity of primary care for identifying and treating behavioral and emotional problems in children.