Junkfood Science: JFS Exclusive: “Has there been a time when you felt you weren't as good-looking or as smart as other people?”

January 08, 2008

JFS Exclusive: “Has there been a time when you felt you weren't as good-looking or as smart as other people?”

After reviewing the evidence, the U.S. Preventive Services Task Force** recently concluded that there is insufficient support for routine screening by doctors for suicide risk. Despite what might seem intuitive, there is no evidence that screening tools accurately identify suicide risk or that screening reduces suicide attempts or mortality. And it found no studies examined the balance of the harms of screening and treatment.

So why are nearly half a million disadvantaged children in Massachusetts being required to undergo mental health screenings in order to receive Medicaid benefits, purportedly to prevent suicides? And why is a controversial privately-funded program seeking to screen every school-aged child in the country for suicide risk and mental disorders?

While this issue has been building for years, many parents and consumers may not be aware of the medical controversies, concerns and costs of these initiatives. But as suicide screening programs, such as the Columbia University-developed TeenScreen, are being enacted by school officials across the country, and the Massachusetts mandatory program went into effect last Monday, it has been in the news and a topic of debate. It's been difficult, however, to learn the facts. The rhetoric has been either hysterical-sounding against these programs or uncritical gushing over how life-saving they are.

What does the evidence actually show?

Many parents believe that if an expert or school official is providing a program, or the government is mandating it, they’ve checked it out and know what’s best for their youngsters. Despite the “trust us, we’re the experts and know what’s best” reasoning to convince parents that they are incapable of looking at these programs and the available evidence, and making decisions for their children — they are. And the first thing that quickly becomes apparent when looking at the impartial evidence is that there is no compelling evidence. Just as the USPSTF concluded. In fact, these programs are far more controversial than popularly presented to parents and the public.

The debate begins

These school screening programs are based on a 10-minute paper or computerized questionnaire that’s said to detect warning signs of mental illnesses and problem behaviors. Positive screens are then compared to a checklist to flag the behavior to one of 30 different disorders, such as social phobia, anxiety, panic disorder, obsessive-compulsive, suicide ideation, etc. and determine if a child needs follow-up. In phase two, children with positive screens are then taken to a mental health professional who conducts an interview and determines if a clinical referral for treatment is required and assigns a case manager. Parents are notified of the recommendations and are assisted in getting treatment by a mental health professional for their child. In some cases, TeenScreen also contacts the family’s insurance company.

Proponents say that there is an epidemic of mental illness among today’s children afflicting up to one in five, and that these screenings can prevent suicides. They also say young people are suffering unprecedented rates of depression, anxiety and substance abuse. Parents and doctors are too busy to ask the right questions and pick up children with undiagnosed mental illness, making these programs important for promoting children’s mental health, according to a Boston Globe editorial.

Others point out that these screenings are not accurate tools for identifying at-risk kids and risk incorrectly labelling vast numbers of relatively normal kids as having a mental illness. Doubts have also been raised about the ability of schools to follow-up on positive scores, and the effectiveness and safety of subsequent treatments. Many cite concerns that these screenings are resulting in large numbers of young people being needlessly put on potentially dangerous psychotropic drugs that have unknown long-term safety and questionable effectiveness. And troubling ethical and legal concerns have been raised. Keep in mind, no one is advocating denying help for young people who truly need it.

With impassioned arguments on both sides, parents deserve evidence-based information and the chance to carefully examine these screening programs for themselves to decide what’s best for their children.

Evidence and outside analyses — SAMHSA

In 2003, the President’s New Freedom Commission on Mental Health issued a recommendation for the role of schools in partnering with the mental health industry, and exampled the Columbia TeenScreen Program as a model for screening and early intervention.

For years, the Substance Abuse and Mental Health Services Administration [SAMHSA] evaluated the evidence for suicide prevention programs and included in its national registry those programs their reviews found to be effective, promising and model. Neither TeenScreen, nor Signs of Suicide (SOS), another national school-based suicide prevention screening program, were included among the recommended programs.

In March 2007, SAMHSA launched a new national registry — National Registry of Evidence-based Programs and Practices — which, it said, was designed to serve as more of a source of information and description of various interventions. Under this new registry, TeenScreen is now listed, with the supportive materials provided last February by Columbia University, the creator of the program. But, according to SAMHSA, the only evidence studying the effectiveness of the program in accurately identifying youth needing mental health services came from two posters presented at meetings and several still-unpublished studies from Columbia.

SAMHSA’s key findings after reviewing these studies gave the program’s quality of research an overall score of 2.5 (out of 4) for efficacy in identifying youth in need of mental health services. Among the studies that had been provided, both reported that the screening program identified significantly more children as requiring mental health intervention than were identified by school professionals — as much as 14-fold more mental health referrals resulted from the Columbia screening program. No note was made of the programs effectiveness in reducing suicides.

Among the weaknesses of the studies, SAMHSA pointed out that “although narrative evidence and fidelity evaluation materials are presented, evidence of any systematic collection of data is lacking. Analyses did not sufficiently address attrition and small sample sizes.” It also found that a convenience sample was used with only two-thirds participation rate and that “results may reflect selection bias....the principal in each school selected the informants who completed the questionnaires, which may have introduced bias.”

SAMHSA also cautioned that “no clear protocol is provided to support local evaluation of program fidelity.” TeenScreen did not include adjustments for population or cultural differences, and failed to identify “adverse effects, concerns, or unintended consequences.”

Perhaps, most disturbing is that, despite the lack of solid evidence for effectiveness and a careful risk-benefit analyses after all of these years, SAMHSA reported that “TeenScreen has been implemented in more than 450 locations in the United States since 1991.”

Review of available evidence

One of the most important studies to date on suicide screening programs was by researchers with the Center for the Study and Prevention of Suicide at the University of Rochester Medical Center in New York. They conducted a comprehensive review of the available research examining the safety and effectiveness of screening as a tool or program to prevent suicide among teens. They published their findings in the journal Suicide and Life-Threatening Behavior. They identified 17 available studies of screening programs. The researchers found a “lack of evidence for widespread use of screening programs for suicide prevention in U.S. Schools.”

In evaluating the sensitivity scores (ability to identify youth in need) of screening programs, they found that up to 52% of youth in need of follow-up were missed. Examining the predictive value of these screening instruments, they found that 67 to 84% of youth identified as being ‘at risk’ will be false positives. In other words, most young people screened and given positive screen scores will have been wrongly labeled. Of particular concern with such large numbers of mislabeled kids are the problems created in school settings by the amount of resources and professionals that are needed to evaluate positive screens. The screening tools are provided free, but it can be costly for schools to administer the programs and provide the necessary phase two professional follow-up of positive screens. Yet, a surprising number of screening programs are implemented without such capabilities. Summarizing the research, they wrote:

[A]pproximately one third of the students in ten urban high schools never received an assessment to establish the ‘meaning’ of the positive score. Indeed, none of the schools were able to complete assessments within the one-week period required by the clinical protocol; most took three weeks. Academic counselors instead of mental health practitioners often were assigned the task of assessing screen-positive. Not surprisingly given the lack of mental health training that these academic counselors have, they had more difficulty with assessing suicide risk than did the mental health practitioners. Staff reported feeling overwhelmed by the large number of screen-positive students who required an assessment in a limited amount of time.

They noted that of 22 New York City middle school students who screened positive for risk at one school, only two were known to have received psychiatric help. In a Wisconsin study, 20 were determined at-risk. Yet in both settings, there was no follow-up completed to determine if the students ever received the follow-up interviews or treatment. Without adequate planning and sufficient resources to provide follow-up on a screening program, it could have “a deleterious impact on the quality of care for youth overall.”

Legal and ethical considerations are central in any considerations of a screening program, they wrote, paying particular attention to privacy concerns and mandatory reporting to authorities:

The screening will not only reveal risk behaviors for suicide, but also may provide students the opportunity to disclose information on family violence or longstanding patterns of abuse, bullying or homicidal threats, risky sexual behavior, pregnancy, participation in criminal activities, or illicit drug use.... [M]any school personnel and clinicians are considered mandated reporters for youth at risk. Therefore knowledge of county, state, federal, and tribal laws is essential in screening program implementation.

Other ethical issues may arise when there are conflicts between professional judgment and specific policies or regulations. One such example involves the creation of a screening record or chart, especially for someone who is “positive.” Is it required; what must be documented; who can see it? Who is notified regarding substance abuse or illegal criminal activities? What are the criteria for notifying parents or for alerting authorities?

These mandatory reporting laws and privacy issues make the compulsory screening of all Massachusetts children receiving Medicaid benefits especially heinous. After a comprehensive examination of the strengths and weaknesses of each of the available studies, they concluded:

Given the lack of an adequate evidence base regarding either the use or the utility of screening programs for preventing suicides, suicide attempts, or factors associated with suicide risk, efforts to use such programs should be regarded as investigational in nature [their emphasis].

A recent review done by the U.S. Preventive Services Task Force also found a lack of evidence that screening programs reduce either morbidity or mortality for adults in primary care settings. As a standard of comparison, we can say with confidence that no new medication to treat depression would be approved for general use based on such sparse data.

In other words, these are experimental and unproven screening programs. This makes informed consent especially imperative, yet, as we’ll see, there is no mention of these considerations on the consent forms.

The parents of Massachusetts children receiving health benefits through the government, though, waive parental rights and have no choice but do what the experts have determined best for their children.

Other expert analyses — balancing risks for harm

A 2006 editorial by Dr. Richard A. Friedman, M.D., director of Psychopharmacology at Payne Whitney Psychiatric Clinic and Weill Cornell Medical College, in the New England Journal of Medicine offered another perspective. He made a case for universal screening, saying that “the chance that a teen has a treatable psychiatric illness is nearly 21%.” He also reported that TeenScreen had screened 55,000 young people in 42 states in 2005 and “about one-third of kids screened positive on the questionnaire, and one half of those were referred for further evaluation,” according to the Executive Director of TeenScreen. The full roadmap for making a case and enacting universal screening of school children was presented to state mental health authorities by Columbia University and its strategic consultant [available here].

Articles by proponents such as these, claiming that one out of every five youngsters has a psychiatric illness that needs treatment, support concerns that these screenings are not scientifically valid tools and are overdiagnosing and mislabeling healthy, but perhaps rambunctious, children as mentally ill. The extraordinarily high rates of false positives concur with these concerns. In a Washington Post article on the debate, Dr. Steven E. Hyman, M.D., former director of the National Institute of Mental Health, was skeptical that tools currently exist that can reduce suicides in children. “By and large, brief diagnostic tests — especially doing broad screening in children — are not well validated, and one has to be concerned about missing real illness or, conversely, interpreting transient life troubles as a mental illness requiring intervention,” Hyman said.

The downsides of these programs are rarely discussed, nor balanced with the purported benefits in reducing suicides. Dr. Ned Calonge, M.D., M.P.H., chairman of the USPSTF** expert team which reviewed the evidence, said there remains weak evidence that screening can distinguish people who will commit suicide from those who will not.

Most depressed people, 99.9%, do not commit suicide, according to the USPSTF expert review. It said suicide is such a rare event, so many clinical trials on managing suicide risk focused on high-risk patients, such as those with a history of self harm, and attempted to extrapolate to the general population. But the USPSTF found no evidence that even treating people at high risk reduces suicide attempts or mortality.

And screening inevitably leads to treating some people who do not need it. “Whether or not we like to admit it, there are no interventions that have no harms,” Dr. Calonge added. And the consequences go far beyond the side effects of the drugs and treatment, but needlessly drive up the cost of insurance for everyone and cause some to lose their coverage.

Young people deserve special care when it comes to diagnoses and interventions that can follow them the rest of their lives, regardless of how inaccurate they might have been. Future military careers could be made ineligible to them, the ability to purchase firearms as an adult could be restricted, future employment opportunities could be jeopardized, and even their health affected.

Simply being diagnosed as mentally ill can also mean stigmatization, as well as taking on the role of a patient. Anyone who has worked in medicine for decades can’t help but notice and feel troubled by how many more young people today believe they suffer from mental health problems and see themselves as patients in need of medications to get them through the day. It is difficult to splice how much of a role this alone plays in the higher rates (up to 5 times higher than the general population) of premature deaths seen among those diagnosed, especially at younger ages, with mental health problems, according to the Centers for Disease Control and Prevention. The CDC recently reported on the Sixteen-State Study on Mental Health Performance Measures, a federally funded project by the Center for Mental Health Services, SAMHSA and the Department of Health and Human Services, which compared the mortality of clients in the public mental health systems. It found mental health diagnoses are associated with numerous social consequences that adversely affect health, including social isolation, lower socio-economic status, substance abuse, unemployment, stigma, low self esteem, and possibly adversely affecting medical care for physical health problems.

Dr. Nathaniel S. Lehrman, M.D., former Clinical Director of Kingsboro Psychiatric Center in Brooklyn, New York and former Assistant Clinical Professor of Psychiatry at Albert Einstein and SUNY Downstate Colleges of Medicine, wrote last weekend in the Boston Globe:

As a psychiarist since 1947, I am appalled that mental health screening is now being required of Massachusetts children on Medicaid. Such screening greatly exaggerates the significance of the normal variations in psychological state. Normal kids will therefore be labeled ‘sick’ and referred for ‘treatment.’ That labeling is often harmful in itself; once tagged, how does a kid prove he's not mentally ill?...For Medicaid kids, however, treatment will almost always involve powerful drugs whose serious side effects can include the stunting of growth. Mental health screening is thus a harmful invasion of the privacy of Medicaid youngsters.

Yet under these mandatory screening programs, parents of Medicaid children who don’t want their children on medications have little choice and feel under duress. They fear being reported to authorities for noncompliance by not doing what government agencies advise in the care of their children.

Invariably, treatment recommended for most children with positive screens means psychiatric drugs. A recent survey of pediatric pyschiatrists published in the Journal of the American Academy of Child Adolescent Psychiatry, found that treatment for 9 out of 10 children referred to them consisted of prescription drugs. The rapid rise in the numbers of young people being prescribed with powerful antipsychotic medications, such as Risperdal and Zyprexa which have not been approved for use in children, is a growing concern. There was a five-fold increase in the use of these drugs in children just between 1993 and 2002, according to a study in the Archives of General Psychiatry, and another 73% increase between 2001 and 2005, according to Medco, a pharmacy benefit manager.

A number of prominent psychiatrists are voicing concerns about the how little is known about the safety of these medications for young people and the risks for side effects and long-term physiological harm. Except for Prozac, selective serotonin reuptake inhibitors are not approved by the FDA for use in young people. They are being used off label. A review of more than 106,000 Medicaid recipients in 2001 found that 75% of the antidepressants were being prescribed for unapproved uses.

As Dr. Lawrence Diller, M.D., a child psychiatrist in Walnut Creek, California, wrote in a recent issue of the American Journal of Psychiatry, he felt disappointed and distressed by the continued support among organized psychiatry of drugs (selective serotonin reuptake inhibitor and tricyclic antidepressants) used to treat depression in children for which evidence for effectiveness “simply isn’t there.” Citing several studies that led experts to question not only drugs’ effectiveness but their safety, as well, he said this shows “just how far the field has moved from the biopsychosocial to the medical model of disease and intervention.”

Others have exposed the troubling degree of conflicts of interests behind these programs and the movement for universal screening. Even the extensive pharmaceutical company ties of TeenScreen’s advisory board has been exampled. Such connections have led many to believe these programs are primarily profit-driven marketing vehicles. TeenScreen doesn’t divulge its funding sources, though, so it’s not possible to verify if they are directly funded by drug companies, or even if sponsored indirectly through nonprofit and patient groups.

Pierre Lemieux, a visiting professor of economics at the Université du Québec à Hull, wrote in a recent Independent Review, that a lot of unsound, judgmental and intrusive interventions masquerade as ‘helping.’ “From elementary school onward, children are indoctrinated,” he said, “presented as health education... for adults, it is peddled as suicide prevention, drug-abuse prevention, and the promotion of mental health.” Reporting that just between 1969 and 1994, the national mental health budget rose from about $3 billion to $80 billion and the number of mental health clinicians grew correspondingly, he observed that the medicalization of everyday life becomes useful in ensuring there is never a loss of people in need of their help. And “it takes a lot of helpless people to keep all the helpers happy.”

Unlike any other medical consent process

We’ve spent perhaps a disproportional amount of space looking at the evidence and concerns being raised about these screenings because so few parents are provided this information, even when asked to give their consent for the voluntary programs.

What leaps out as most disturbing and telling in all of this is that a reliable health program with proven benefits would freely provide parents with impartial and sound information on the effectiveness, benefits and risks for their children, and afford parents the opportunity to give fully informed consent. There would be no need to bypass parents and legislate these programs, or to resort to tactics to manipulate parents into consenting. Yet, that is what’s been found in investigations by groups such as the Alliance for Human Research Protection and consumer group TeenScreenTruth.com, as well as by the University of Rochester researchers.

It begins with the screening questionnaires themselves. Under Federal law (U.S. Code Protection of Pupil Rights Amendment) parents have the right to see the questions and materials before consenting to any screening of their child, and screening requires written parental consent. But: 1). few parents actually see the survey questions, as they are not part of the consent process, and 2). TeenScreen can get around the written consent requirement by working to make the screenings part of school curriculums given to all children.

The most powerful evidence against these screenings are the questionnaires themselves. Any creditable discussion starts with looking at the questions. A copy of a TeenScreen questionnaire is archived here. Parents receiving a copy of the questions would likely understand in an instant why these screenings are controversial and have so many false positives. Parents don’t need to be experts to see that the vague questions, asking young people about their feelings and behaviors, also describe a lot of normal feelings everyone has sometimes. They wouldn’t even need to think back on the insecurities of their growing up years and of normal teenage angst to imagine how many youngsters would answer these. In fact, most adults would probably answer yes to many of these questions!

Children can also unwittingly get a positive screen by not answering any of the questions. Although they are told that participation is voluntary and they don’t have to answer any questions they don’t want to, in fact, the computer test is set up according to the Columbia scoring guidelines, so that any question not answered makes it a positive screen and subject to review.

The consent forms [such as received by parents archived here, and the master one provided by TeenScreen on their website here], however, provide insufficient information to enable parents to give fully informed consent. There is no mention of the lack of supportive evidence, expert reviews concluding these are experimental, or of the potential risks. Nor are parents provided with the survey questions for review. This information also isn’t made available to parents on parent information resources provided.

TeenScreen has also been found to employ two other tactics that would never be part of a medical consent process, and contradict voluntary and informed consent. According to TeenScreenTruth, these techniques increase their chances of screening kids from 50% to 95%.

Opt-out. The TeenScreen program assures school administrators that the program is voluntary and the screenings are only done with parental consent, and that they encourage an active consent process. But one technique some areas do use, and was documented by the University of Rochester authors, is called “passive consent” of the “opt-out consent:” a consent form is sent home with kids and if it’s not returned, then parents are considered to have given their approval. The University of Rochester paper also reported on one Wisconsin school that had even “informed” parents with a note in the “back to school” section of the local newspaper.

Kid buy in. The second controversial technique they’ve been found to use is to get the kids to buy into the program. They promise kids and teens a get-out-of-class free card, and free movie passes, food coupons or gift certificates for participating. The kids go home and convince their parents they want to do this, with little understanding of the long-term consequences.

Such coercive tactics would never be acceptable with any other medical release or consent process. This may explain, in part, the upset among parents opposing these programs and among those discovering their children had been screened without their active consent.

Closing thoughts

This investigative report illustrates several valuable take-home messages. We typically accept health programs that sound good and we believe help children as being commendable and above reproach. Rarely do we question experts or the evidence, or consider the possible negative consequences for ourselves.

These mandated and school-backed screening programs show that intuitively believing that officials or credentialed experts always knows what’s best for us, and have carefully and impartially weighed the evidence, isn’t always true. In fact, it has never been more important for us to become informed and to think critically about things we hear when making decisions about our own health and those of our children. This isn’t about the value of having a trusted health advisor.

The greater danger in regularly letting others decide what’s best for us is that we assume a passive and dependent, patient role. And that makes us more vulnerable to being taken advantage of, rather than know we are empowered and capable. As the unsound medicalization of everyday life continues to grow, vast numbers of people from young ages believe they are unhealthy and at risk. Yet feeling unhealthy isn’t healthful. Aging is seen as a disease and even childhood and adolescence is now seen as an affliction and such a perilous time that professional intervention is necessary to survive it. Yet vast numbers of children believing themselves mentally ill for normal feelings and behaviors isn’t healthful, either.

© 2008 Sandy Szwarc

** As you may remember, the USPSTF is under the Agency for Healthcare Research and Quality, the Federal government’s lead agency under the U.S. Health and Services Department and is charged with issuing careful, evidence-based findings that are to be used to develop clinical guidelines for healthcare providers.

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