Something's Strange: Treatment of Developmental Disorders in Japan (1) Unnecessary Tests - Director's Blog



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Something's Strange: Treatment of Developmental Disorders in Japan (1) Unnecessary Tests

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Medicine is a natural science, and in its application as medical care, it is necessary that diagnosis and treatment be based on scientific grounds to the extent possible. For this reason, evidence-based medicine has become the slogan of medical care today.

When examinations are carried out beyond what is necessary to diagnose a disease, they not only increase the burden on the patient, but also lead to higher medical costs, and are considered something to be avoided. After all, it makes sense that an electroencephalographic examination (EEG), which records brain wave patterns, is not necessary to diagnose diabetes. Of course, it is possible to conduct an EEG, but the health insurance provider would judge it to be an unnecessary expense and refuse payment to the hospital. One of the merits of Japan's health care system is that does not pay the hospital for expenses related to unnecessary tests and treatment, which prevents doctors from arbitrarily ordering unnecessary tests and increasing income.

The above pertains to diseases in general, but even unnecessary medical treatment for children with developmental disorders, who are estimated to account for 7 percent of all children, is receiving much attention. I would like to express my longstanding concern about an issue also mentioned in the title of this article: Is excessive medical treatment a problem today? As a matter of fact, this has been the most sensitive issue that I remember in recent years, and just thinking about it is enough to keep me up at night.

First, let's consider unnecessary medical tests.

Developmental disorders include attention deficit hyperactivity disorder (ADHD), autism spectrum, and learning disorders, and with the exception of learning disorders, there are no examinations that can diagnose these conditions.

It is not possible to diagnose ADHD or autism spectrum disorder through blood tests, EEG, brain function imaging such as MRI, or psychological tests including intelligence tests.

Doctors and researchers in medicine and psychology are actively searching for ways to test and diagnose ADHD and autism spectrum disorder, but unfortunately, these efforts have not yet been successful.

Although brain function imaging and genetic testing yield specific data on patients with ADHD and autism spectrum disorder, this information cannot be used for diagnosis. Take, for example, a case of a person with ADHD. Brain function imaging tests will indicate a high incidence of decreased functioning of the prefrontal cortex and caudate nucleus, but the data is statistically only somewhat lower than average, and it is not possible to clearly distinguish this from typical development.

The same issue arises with genetic testing. There are no biomarkers that serve as the basis for diagnosing developmental disorders. This applies to other disorders as well, and it is the same with depression and schizophrenia. There are psychological tests that indicate a tendency toward depression, but it is not possible to diagnose depression based on them.

In this case, how should doctors diagnose ADHD and autism spectrum disorder?

To respond to this issue, the American Psychiatric Association began publication of the "Diagnostic and Statistical Manual of Mental Disorders." Providing criteria for diagnosis of various mental disorders including developmental disorders, the manual is regularly updated and revised, and the 5th edition was published in 2013. As noted in the title, it is also a "statistical manual," and it provides statistical standards for making a diagnosis by listing the multiple characteristic symptoms, which lead to an establishment of a diagnosis if a determined number or more of these symptoms are present.

Regarding the diagnosis of ADHD, medical textbooks in the United States, for example, instruct students to obtain information on current characteristics of behavior at school, at home, in the neighborhood, etc., and thorough history to see if they meet the diagnostic criteria. If necessary, they also suggest using a questionnaire to evaluate aspects of the child's behavior. However, they also clearly state that there are no specific tests or psychological tests. The following are excerpts from several textbooks.

"...there is no single test to diagnose ADHD....It is only when symptoms are persistent, are pervasive (they are present in multiple environments), cause impairment greater than that expected for the child's developmental age, and cannot be accounted for by another disorder that ADHD is established as the diagnosis." (Developmental and Behavioral Pediatrics). "A diagnosis of ADHD is made primarily in clinical settings after a thorough evaluation, including a careful history and clinical interview to rule in or to identify other causes or contributing factors; completion of behavior rating scales; a physical examination; and any necessary or indicated laboratory tests." (Pediatrics). When they say any necessary tests, they refer to cases when other disorders involving ADHD are suspected (differential diagnosis).

Based on these standard diagnostic methods and using a survey to assess behavior recommended in the above books, I have been surveying parents of children receiving outpatient treatment, childcare workers, and tutors at cram schools who frequently interact with the children. The survey asks questions about the children's developmental history and current behavioral characteristics.

However, recently, I had a very surprising experience. At the request of a family that was moving and wished to receive a letter of introduction for their next hospital, I wrote a basic referral, providing information on the ADHD diagnosis and currently prescribed medication. I later received the following letter from the doctor, a specialist in developmental disorders, at their new hospital.

"Thank you for the introduction. Based on the initial diagnosis, ADHD appears correct, but I would like to make a definitive diagnosis following formal procedures. At this hospital, we will conduct WISC, DN-CAS, K-ABC, BGT, ... cranial MRI and blood tests in line with the guidelines on diagnosis and treatment of ADHD set forth by the research team of the Ministry of Health, Labour and Welfare and establish a treatment policy and coordinated plan with the school."

Furthermore, in the letter, the word "formal" was underlined.

I understand the enthusiasm of the physician in charge, but why are so many unnecessary tests given? I have never heard of or read about MRI or blood tests being included in proper diagnostic tests for ADHD. There is, however, one fact that makes it difficult to blame the physician.

I am referring to the ADHD diagnosis guidelines of the research team of the Ministry of Health, Labour and Welfare that were noted in the answer. The guidelines introduced an "ADHD medical diagnosis and evaluation flowchart" that listed such tests as height and weight measurement, EEG, and blood tests (including thyroid function), and electrocardiogram and recommended cranial MRI and cranial CT. Also included was a diagnostic flow chart that advised administering the WISC to those who may have ADHD.

These tests are not used for initial diagnosis but conducted for the purpose of ADHD differential diagnosis. In the case of symptoms that cannot be explained by ADHD alone, such as a gradual increase in inattentiveness and hyperactivity (progressive neurological disease), falling completely behind in class (intellectual disabilities), spasms (epilepsy), etc., it becomes necessary to conduct blood tests, WISC, or electroencephalography (EEG) for differential diagnosis.

If we read closely, the guidelines for diagnosis and treatment of ADHD state that the EEG, MRI, etc., are intended for differential diagnosis, and that also contradicts the chart that lists them as necessary tests. The diagnostic standards in Japan are unique and completely differ from the diagnostic procedure in medical textbooks of the United States and other countries. I would like to end by adding that I hope the doctors who consider these standards to be proper diagnostic methods are the exception in Japan.

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sakakihara_2013.jpg Yoichi Sakakihara
M.D., Ph.D., Professor Emeritus, Ochanomizu University; Director of Child Research Net, Executive Advisor of Benesse Educational Research and Development Institute (BERD), President of Japanese Society of Child Science. Specializes in pediatric neurology, developmental neurology, in particular, treatment of Attention Deficit Hyperactivity Disorder (ADHD), Asperger's syndrome and other developmental disorders, and neuroscience. Born in 1951. Graduated from the Faculty of Medicine, the University of Tokyo in 1976 and taught as an instructor in the Department of the Pediatrics before working with Ochanomizu University.