Children With Mental Problems Not Getting the Care They Need

Most of the estimated six to nine million children and adolescents in the United States with serious emotional disturbances are not getting the help they need, according to federal health officials, mental health experts, and mental health advocacy groups.

This unmet need is coming under unprecedented scrutiny by federal health officials, professional groups, and others.

Last December, US Surgeon General David Satcher released Mental Health: A Report of the Surgeon General. This 500-page publication, the first-ever Surgeon General's report on this issue, underscores that a range of barriers make it difficult for people with mental illness—both children and adults—to receive appropriate care.

Such barriers include a lack of health insurance and other financial problems, cultural stigma that discourages families from seeking care, a lack of mental health care professionals with expertise in treating children and adolescents, and a complex and fragmented mental health service delivery system.

"There is broad evidence that we lack a unified infrastructure to help these children and many children are falling through the cracks," noted Satcher in remarks at a press briefing last month. "Too often, children who are not identified as having mental health problems and who do not receive treatment enter the juvenile justice system and end up in jail."

Experts also note that children with emotional and behavioral disorders are more likely to abuse drugs and alcohol and are at higher risk of suicide.

Concern about this issue also prompted the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics (AAP), the American Psychological Association, the American Psychiatric Association, and eight other national organizations concerned with the mental health needs of children to develop a consensus statement with recommendations to address the problem.

The impetus behind this cooperative effort was the recognition that although the need for mental health services has been increasing for two decades, efforts to curb health care costs have resulted in decreased availability of such services, said Joseph Hagan, MD, a Burlington, Vt, pediatrician who chairs the AAP committee on psychosocial aspects of child and family health.

A recent study at the University of Pittsburgh found that between 1979 and 1996, the rate of psychosocial problems identified in the primary care setting increased dramatically, from about 7% to more than 18% of all visits to the pediatrician by 4- to 15-year-olds (Pediatrics. 2000;105:1313-1321). Despite this increased recognition of such problems among children and adolescents, "it's actually getting harder rather than easier to access mental health services," noted Hagan.

The groups outlined 20 recommendations aimed at increasing access to treatment, including increasing resources in both public and private sectors; establishing parity between medical health services and mental, behavioral, and substance abuse services; simplifying the process required for young patients to receive treatment; eliminating exclusions for diagnostic categories, chronic disorders, and preexisting conditions such as chronic illness; and increasing the number of qualified child mental health and substance abuse clinicians.

At a conference on children's mental health convened last month by the Surgeon General, some 300 pediatricians, psychologists, psychiatrists, family advocates, and educators met to discuss barriers to care and develop a national action plan for identifying and treating mental illness in the nation's youth. The plan, which will be released by the end of the year, will reflect recommendations from the meeting as well as findings from a conference held this month on medications in preschool children.

One area of agreement that emerged from the surgeon general's conference was the need for a broad system to identify, diagnose, and treat children with mental disorders, Satcher explained. Because children who aren't identified cannot be diagnosed or treated, it is essential to educate the adults who are closest to children and adolescents with potential problems—parents, teachers, and primary-care physicians—about behavioral and emotional issues.

"We need to learn from the field of cancer and its lifesaving ‘five warning signs' and create a simple set of warning signs for mental and behavioral problems with kids," said Satcher"This information needs to be distributed widely to parents, the general public, as well as professional groups."

An office-based "primer" that would help parents know what questions to ask their child's physician and underscore the issues physicians should be raising with parents could also identify troubled youngsters.

Communicating such information isnot easy during an 8- to 12-minute office visit, but technology also might be enlisted to help primary care physicians identify children with mental disorders, said Kelly Kelleher, MD, of the University of Pittsburgh. A touch-screen computer setup in the waiting room that asks parents a series of questions could elicit pertinent information and score the results on the spot, providing the physician with a tool for spotting potential mental health problems.

Not surprisingly, many children have difficulty getting care because of financial barriers. Nearly 12 million children age 18 and younger are uninsured, according to the Children's Defense Fund.

"The number one problem is what to do with uninsured children," said Kenneth B. Wells, MD, MPH, of the University of California, Los Angeles, and RAND Corp, Santa Monica, Calif. There is no single solution to this problem because states vary a great deal in the levels of mental health support they provide for such patients.

Some children whose families have private health insurance are considered underinsured because they lack adequate mental health benefits. Although legislation to establish parity between medical and mental health services may be intended to establish mental/behavioral health benefits, in practice such measures may not translate to adequate care.

According to data presented by Wells from an analysis of three large national data sets involving more than 46,000 children, more than seven in 10 adolescents with mental health problems receive no care. Adolescents from families lacking health insurance are even less likely to be treated.

About 80% of uninsured children who need mental health services receive no care, the study showed. Minority children are also less likely to receive appropriate care—more than 80% of Latinos with mental health problems do not receive care.

Yet another barrier is a health care system geared to acute illness, not chronic disorders, noted Kelleher. "Even in children identified as having a mental health problem, less than 41% ever saw a mental health professional within the next 6 months," he said. Moreover, only 13% of those referred had more than five or six visits within the next 6 months.

"For a child with a behavioral health problem, getting just one visit per month over the next 6 months is a minimum of care—and yet 87% of the population didn't even come close to it," Kelleher noted.

Another deterrent to care is the scarcity of physicians and other mental health care professions with expertise in treating children and adolescents. As a result, young patients may face long waiting periods before they can receive help. And quite often, managed care plans may approve only a few sessions, necessitating a cumbersome reapproval process for patients who need ongoing therapy.

For relatively rare but life-threatening eating disorders, notably anorexia nervosa, appropriate programs in the community may not exist at all, said Marsha Marcus, MD, chief of the eating disorders program at the University of Pittsburgh School of Medicine and a member of the Academy for Eating Disorders.

"Our own center is a resource for inpatient treatment for a fairly large geographic area, including the western part of Pennsylvania, West Virginia, and much of Ohio," said Marcus. Even patients who receive approval for treatment there from their state Medicaid programs or insurance companies may not be able to remain long enough to ensure recovery.

Experts gathered at the surgeon general's conference stressed the need for evidence-based programs based on strategies that have been proven to work.

"Everyone in the field agrees that we need to get information on the effectiveness of some of the programs we have," said Wells. But in many cases, the studies needed to provide such evidence have not yet been done.

In the meantime, children and families in distress need help now. "We need to use what we already know and learn fast what remains to be understood," Satcher said.

A newborn in Ohio is screened for homocystinuria. A newborn in Oregon is not, but is screened for biotinidase, something that isn't part of the screening panel in Ohio. Newborns in Massachusetts are screened for 11 congenital conditions; in South Dakota, for only three.

This is the crazy-quilt status of screening the estimated 4,000,000 infants born annually in the United States and a major reason a task force has published a report outlining the issues public health officials, parents, physicians, and politicians should resolve in this arena (Pediatrics. 2000;106(suppl):383-427).

The Newborn Screening Task Force was convened in May 1999 by the American Academy of Pediatrics at the request of the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau.

The task force highlighted five issues that require resolution. They are:

The task force raised these issues at a time when the opportunity to screen for many more disorders is about to explode because of the adoption of new testing procedures such as tandem mass spectrometry and DNA-based testing. Implementing such developments will require debate among the interested parties to decide how best to use these new technologies to improve children's health.

That debate is already under way. Earlier this month, the National Institutes of Health (NIH) held a consensus development conference on phenylketonuria (PKU) screening and management. The NIH wanted to create state-of-the-art recommended strategies for optimal newborn screening and diagnosis, lifelong management, and follow-up of PKU.

Publication of the task force report was met with general approval, although some suggested it didn't go far enough and others thought it ignored issues surrounding follow-up care for newborns who test positive.

Edward R. B. McCabe, MD, PhD, cochair of the task force and president of the American College of Medical Genetics, said he understood the concerns but felt that what was published was needed today.

"I think screening is part of the public consciousness," said McCabe, who is in the Department of Pediatrics at the University of California, Los Angeles, School of Medicine. "And we're seeing huge changes in how we test. Because of new technologies, there are now issues not only of discrepancies among states in disease testing, but there are differences in the quality of the testing."

Screening of neonates began in the early 1960s, following the work of Robert Guthrie, MD, who created a test to identify the presence of PKU. In 1962, Massachusetts began a voluntary newborn PKU screening program. Pressure by child advocacy groups ultimately changed the volunteer nature of the screening into state-legislated testing. In the early years, this government-mandated testing was opposed by the American Medical Association and some state medical societies on the grounds that it intruded on the patient-physician relationship.

Today, such opposition is gone and all 50 states and the District of Columbia have mandatory testing for PKU, congenital hypothyroidism, and galactosemia. But most states test for other things as well. Only South Dakota and Utah test for just the three conditions. Other disorders tested for, as of July, are maple syrup urine disease, homocystinuria, biotinidase, sickle cell disease, congenital adrenal hyperplasia, toxoplasmosis, cystic fibrosis, tyrosinemia, HIV infection, medium-chain acyl–coenzyme A dehydrogenase, and glucose-6-phosphate dehydrogenase. In addition, universal hearing screening is mandatory.

McCabe would not specify a minimum or maximum number of tests that should be performed in all states, but he noted the task force's recommendation for a debate on the issue among the interested parties.

"We felt there should be some group to determine which tests every newborn should have," he said. "So I was quite pleased that we were able to agree unanimously that we needed a national agenda on this."

But the lack of specifics in the report has led to criticism. The March of Dimes Foundation stressed the need for testing for an unlimited number of diseases, provided such screening would benefit children (Pediatrics. 2000;106:595).

"Although there is much in the report with which we agree, we must take issue with it in several respects," wrote Jennifer L. Howse, PhD, and Michael Katz, MD, on behalf of the March of Dimes in the Pediatrics commentary. They said, "We believe that a test (even for a rare disease)—as long its early discovery makes a difference to the child—must be conducted for every newborn. We believe that a currently available test should be abandoned for a new one, if the latter achieves a greater precision and offers a shorter turnaround time, no matter what the cost differential."

Peter C. van Dyck, MD, director of the Maternal and Child Health Bureau, understands the March of Dimes' push for more screening, but said the task force was not charged with taking such a position.

"The first report was not meant to do that. Its purpose was to collect the information; find out what the state of the field is and make recommendations," van Dyck said.

Another criticism centers on the tendency of society to focus on testing while not providing adequate resources, or care, to those testing positive and their parents, said Paul J. Edelson, MD, a professor of clinical pediatrics at Columbia University's College of Physicians and Surgeons.

"I think it's important to appreciate that screening should never be an end in itself," Edelson said. "And unless screening is understood to lead to a better outcome for children found to be positive for a disorder, then the screening may be more harmful and create anxieties that can't be addressed." As an example, Edelson cited newborn screening for histidinemia—which, he said, turned out to be a benign disease requiring no treatment, but whose diagnosis scared parents.

Yet another worry related to the report's recommendations centers on parental consent. The task force stated that parents, on behalf of their children, have a right to be informed about neonatal screening and a right to refuse such testing. The task force also said these parents had rights to confidentiality and privacy protection for information contained in all newborn screening results.

This absolutist position, especially in light of parents refusing screening, has been questioned over the years. Opponents to informed consent argue that the logistics of presenting meaningful discussions with parents prior to testing can be difficult because of varied birth settings and time constraints. They also argue that mandatory testing is in the best interest of the child and that the state should have the ability to require such testing (Am J Public Health. 1997;87:1280-1288).

So while some controversy remains around the direction and focus of newborn screening, the task force hopes its report serves as the foundation on which further debate is built. And, to that end, it recommends that HRSA "engage in a national process involving government, professionals, and consumers to advance the recommendations of this task force and assist in the development and implementation of nationally recognized newborn screening system standards and policies."

Tomorrow, five fortunate investigators will meet in Toronto, Ontario, to receive this year's Gairdner Foundation International Awards for Achievement in Medical Science. At a dinner culminating a series of activities, including a formal presentation of lectures on their research at the University of Toronto Faculty of Medicine, each will receive a citation, an honorarium, and Le Coeur, a work by sculptor Donald Liardi.

The Heart is particularly apposite for Jack Hirsch, MD, DSc, whose award is given "in recognition of his pioneering contributions to our understanding of the diagnosis, prevention, and treatment of thromboembolic disorders." Previously a winner of the Sol Sherry Award of the American Heart Association, among numerous other honors, Hirsch developed and then investigated diagnostic techniques related to thrombolysis. His work set the standard internationally for clinical use of the anticoagulants heparin and warfarin.

Hirsch, who is director of the Hamilton Civic Hospital Research Centre in Hamilton, Ontario, pioneered basic studies that led to the discovery of the unique characteristics of low-molecular-weight heparin. Subsequent laboratory studies by many investigators in Canada and Europe revolutionized antithrombotic therapy by making it possible for patients to administer such therapy to themselves at home.

Hirsch has been inducted into the Canadian Medical Hall of Fame and named to the Order of Canada.

Researchers from both coasts of the United States are Gairdner winners for similar studies. Roger D. Kornberg, PhD, professor of structural biology in the Department of Structural Biology at Stanford University Medical School, Palo Alto, Calif, and Robert G. Roeder, PhD, professor and head, Laboratory of Biochemistry and Molecular Biology and Arnold O. and Mabel S. Beckman Professor at Rockefeller University in New York City, have been conducting genetics research for more than 30 years. They were cited "for their studies on the transcription machinery and the elucidation of the basic mechanisms of transcription in eukaryotic cells."

Both members of the National Academy of Sciences, the two men provided the foundation for and continue to contribute to advances in understanding of eukaryotic transcription (the reading of genetic information). Transcription and its regulation are key to all cellular processes and central to understanding human biology.

Roeder's early work included describing and beginning the functional characterization of three eukaryotic RNA polymerases, as well as studying their subcellular localization. His studies eventually enabled the purification of protein factors and the study of transcription and regulation at the biochemical and molecular level.

Parallel and complementary work with the yeast Saccharomyces cerevisiae by Kornberg set researchers on the road to elucidating the mechanisms of transcription and its regulation. Recently, scientists in his laboratory completed the first detailed structural analysis of a transcription complex from a cell with a nucleus, adding important information and suggesting new approaches for further analyses of eukaryotic transcription.

Investigation of the immune system garnered a Gairdner for Alain R. M. Townsend, PhD, of the Institute of Molecular Medicine at the John Radcliffe Hospital in Oxford, England, and Emil Unanue, MD, head of the Department of Pathology and of the Immunization Program at Washington University School of Medicine in St Louis, Mo. The awards jury cited them "for their discovery of the molecular and cellular basis of antigen processing leading to our understanding of the physiological role of histocompatibility molecules and T lymphocyte antigen recognition."

The discoveries made by these two scientists established the biochemical basis of the recognition of antigens by the immune system; they led to an understanding of the critical events that enable the immune system to distinguish "self" from "nonself" or harmful pathogens. While immunologists had recognized since the 1970s that the gene products of the major histocompatibility complex (MHC) were central to the recognition of pathogens by T lymphocytes, it was Townsend and Unanue who demonstrated that MHC molecules are peptide-binding molecules.

Unanue discovered that protein antigens are internalized and catabolized by antigen-presenting cells, thereby creating the antigenic peptides that bind to newly synthesized MHC class 2 molecules. Townsend discovered that cytotoxic T cells, which are derived from viral proteins synthesized intracelluarly, recognize peptides that are associated with class 1 molecules. The two discoveries together enabled immunology researchers to recognize the related roles of MHC class 1 and 2 gene products.

"Together," said the Gairdner Foundation, "their fundamental contributions have led to the molecular characterization of T cell antigen recognition and have opened the field to a rational analysis of the pathobiology of infectious and autoimmune diseases."

Townsend, who is now an honorary consultant in general internal medicine at John Radcliffe Hospital, participates in hospital medical practice, teaching, and research. In 1992, he was elected to Fellowship of the Royal Society and shared the Louis Jeantet Prize for Medicine. Unanue, who is a member of the National Academy of Sciences, in 1995 shared the Lasker Award in Basic Medical Science.