Paper on ECT statistics at MH Stats Conference

This is an outline of a paper I gave at the 2001 Mental Health Statistics Conference (SAMHSA) in Washington, DC.

ECT Reporting – The Statistical Gap

Shortly before she left office as SAMHSA Director, Dr. Nelba Chavez spoke of the pockets of mental health research that existed. These were pockets of good, solid research, but she encouraged those in the field to push on and to try to close the enormous gaps that exist in research today.

The field of electroconvulsive therapy, or ECT, is littered with chasms where research simply does not exist. This paper will highlight those gaps, as well as propose new directions for ECT research.

The most basic question, how many people have ECT each year in the US, is not answerable. Researchers can estimate, and these estimates generally range from 100,000 to 200,000 persons per year. But precise numbers continue to evade us, and the last major study to undertake the question of how many patients in the US receive ECT annually was published in 1994. This study, “The Use of ECT in the United States” by JW Thompson et al, used estimates from the NIMH Sample Survey Program for 1975, 1980 and 1986 to conclude that ECT use dropped dramatically from more than 58,000 in 1975, to an estimated 36,558 patients in 1986.

A study in 1995 by Hermann used data from the American Psychiatric Association’s 1988-1989 Professional Activities Survey to estimate ECT use in 317 metropolitan statistical areas. Annual ECT use varied from 0.4 to 81.2 patients per 10,000 population.

While this was a engaging study, it relied entirely upon those APA members who responded to the survey, and their 4,398 patients treated with ECT. The authors concluded that the estimated national rate of ECT utilization would be 4.9 patients per 10,000 population, resulting in an estimate of 100,000 US patients treated with ECT in the year studied, 1988-89. So the first study concluded 36,500 patients were treated with ECT in 1986, and the second study estimated 100,000 patients treated two years later. It seems unlikely that the use of ECT in the United States would nearly triple in two years.

Thus, we come back to the question, just how many persons are treated with ECT each year? The answer is we don’t know.

This illustrates what many consider to be the biggest problem in contemporary ECT research – the lack of real data. There is no lack of research on ECT, with two professional journals devoted entirely to the subject. But as Dr. Chavez pointed out, the research exists in pockets. One of the biggest areas of research involves the continuing quest to prove the mechanism of action, just how ECT works. Despite millions of dollars and countless hours of research, a definite answer continues to elude scientists.

A few states have enacted legislation to help answer this question – and others. Those states include Massachusetts, Illinois, Vermont, Colorado, California and most notably, Texas. Two weeks ago, the Missouri State Senate rejected a statewide ECT reporting bill, calling it too controversial.

Indeed, the legislation passed in Texas has seen opposition along the way. The statute in Texas goes beyond mere reporting to include restrictions on the use of ECT on anyone under age 16, as well as limiting the number of treatments per patient, requiring a second opinion when used on the elderly and tighter control of involuntary ECT.

Many ECT practitioners and proponents fought the reporting law, but a report written by three prominent Texas psychiatrists last year called it  source of valuable data and recommend a continuation of the reporting requirement. And, they call for additional rating instruments, including a patient self-report rating scale for symptom severity and memory impairment, as well as a longer follow-up period. Currently, Texas only requires a four-week post ECT follow-up.

How many people die annually from ECT? The American Psychiatric Association reports a figure of 1 in 10,000. While the Texas statistics don’t show a clear number since cause of death isn’t listed, a review of autopsy reports indicates a rate of closer to 1 in 450. Of course the state of Texas is not representative of the rest of the country because of its tighter regulations. Researchers should have better data than this. Having no way of knowing accurate numbers of patients treated each year, or the number of complications – this is unacceptable from a scientific standpoint.

There are several other areas of interest that arise from an analysis of the Texas data, including the high use of bilateral ECT, approximately 82 percent. This number conflicts with the widely-touted viewpoint that unilateral is used more often today because it causes fewer side effects.

We come back to the idea of pockets of great research, with enormous gaps we need to fill.

The wealth of data gathered in Texas over the last several years should be a model for a federal reporting system of ECT. Last summer, the National Mental Health Association announced in its policy statement that it advocates the establishment of a national data bank, operated under the oversight of the Center for Mental Health Services, requiring the scrupulous recording of all ECT given, with documentation and dissemination of results.

So the first order of business must be such a database and a federal ECT reporting law.

A second area of research that must be addressed is the area of memory research. There exist a variety of studies that examine memory issues in ECT patients. However, critics insist that the measures of memory loss are superficial and ignore major components of the system of memory.

Writing in Nature last year, neuroscientist Peter Sterling says: “Memory loss could be monitored by questioning patients before ECT about early events in their lives and then re-questioning them following each series of ECT. When this was done 50 years ago, memory losses were marked and prolonged. However, no effort has been made since to routinely perform this simple test.”

That study fifty years ago was done by Irving Janis, and remains the definitive study of the effects of ECT on memory. Janis interviewed 19 patients at length, and then interviewed them four weeks after ECT, attempting to obtain the same information. He gave the same interviews to controls who did not have ECT. Janis wrote “Every one of the 19 patients in the study showed at least several life instances of amnesia and in many cases there were from ten to twenty life experiences which the patient could not recall.”

Studies undertaken in the 70s and 80s added to Janis’ findings that ECT does, in fact, produce memory loss.

But contemporary researchers continue to maintain that ECT does not produce permanent memory loss and that such reports are either the result of patient misunderstanding, or the effects of the depression and not the ECT.

This has caused a great chasm between researchers and persons who identify themselves as ECT consumers and survivors. Even those who say they were glad they had ECT complain of memory loss and say they wish they had been told of the risks upfront.

Since the beginnings of ECT use, patients have complained of cognitive impairment and those complaints have remained consistent through present time. ECT patients and survivors alike have asked researchers to focus more upon these issues, but are told “it’s all in your head” and their complaints dismissed.

Anecdotal reports of success are welcomed and even published, yet the large body of anecdotal reports that focus upon the negative side of ECT are discarded, saying that anecdotal reports are not valid.

One of the biggest problems with the memory studies as performed today is that they do not use sensitive and elaborate testing, such as those used by de Mille to differentiate matched subgroups of fifty patients who were lobotomized in the 60s. Many so-called memory tests today simply use the Mini Mental State Exam to prove that no deficits occur. Critical researchers say it’s not difficult to find, but you must test for it, and they continue to say that contemporary studies are deliberately not testing for deficits they know will appear. In the study of permanent effects of ECT, testing such as that of de Mille should be made at intervals of a day, a week, a month and a year post-ECT.

Let’s return again to the Texas data.

I’d like to hand out the actual reporting form that is used in Texas.

There have been two major journal articles that have analyzed the data, one in the Journal of Forensic Sciences November 2000; the other in Journal of Clinical Psychiatry in 1998.

(quotes)

This does illustrate the problems associated with the treating ECT physician deciding for the patient and often not hearing any complaints. As you can see from the form, the doctor simply chooses a number from one to five. One of the journal authors does go on to suggest a patient self reporting form, and this would be a strong addition to the current collection of data.

(subjective nature of severity and memory impairment)

A federal database of these kinds of data would be extraordinarily valuable in providing tools with which researchers could evaluate ECT, and examine trends.

Consumer/survivor input into research studies is needed so that the issues that are important are no longer ignored. A research panel that is made up of consumer/survivors should be established, and it should direct some of the research. It should go beyond an advisory capacity and encourage consumer/survivors to lead the way and begin to research the issues that concern them.

As the saying goes, nothing about us without us and that saying applies to research. More than sixty years of being told “it’s all in your head” must change and consumer/survivors need access to research funds, as well as the accommodations necessary to give them the tools they need to perform valid, scientific research…concerning the issues that affect them.

Some very strong efforts are being made to include consumer/survivor voices in policy decisions, but an equal effort must be made in the research arena.

Another of the criticisms directed at ECT researchers is that the bulk of the research is conducted by the same group of people. They sit on the editorial boards of the journals and some have financial interests in the manufacturing companies. Allowing consumer/survivors a voice in these research projects, as well as the opportunity to provide some outside direction could help in overcoming some of the criticisms.

However, barring full inclusion into the research process, ECT consumer/survivors should be given the resources to do their own research, on those issues they feel have been continually ignored.

Animal studies are a third area of concern in the realm of ECT research.

The majority of studies on the effects of ECT on animals were done in the 40s and 50s. Numerous authors have called upon these studies as evidence that ECT does cause brain damage. Contemporary researchers dismiss the studies, saying they were done 50-60 years ago and are no longer valid due to problems in methodology and due to claims that the process of ECT is substantially different today. Yet researchers are not attempting to do similar studies using more modern machines and better scientific methods.

A review of Medline citations that involved the study of ECT and animals returned thousands of citations, leading at first glance to the belief that animal studies are being conducted. However, closer examination reveals that the criticisms are valid. The animal studies involve almost exclusively the continuing quest to discover how ECT works.

Surely some of this research money could be used to repeat the studies of earlier decades. Until a major animal study similar to that of Hans Hartelius in 1952 and many others like his, the disagreement will remain and the question never fully answered: Does ECT cause brain damage. Both sides of the controversy remain steadfast in their views, but good, solid animal studies are needed before the truth will ever be known. And to deflect the criticism that will definitely result from both sides, depending on the outcome, I would like to see several large, multi-disciplinary studies involving large animals, bringing in experts from outside the field of ECT.

ECT isn’t the only area where there exist research deficits of course. But it is very illustrative of an area of research that is closed to outsiders and where any criticism is continually deflected, despite six decades of consistent complaints.

And that brings us to the topic of anecdotal reports, a very problematic area for researchers.

When the FDA classified ECT devices in 1979 as the most dangerous and demonstrating an unreasonable risk of illness or injury, the American Psychiatric Association heavily lobbied the FDA to reclassify the machines as safe. The original classification would have required the industry to perform animal testing and prove its safety. However, ECT survivors organized and also lobbied the FDA. This resulted in over 1000 anecdotal reports to the FDA.

Because complaints are not taken seriously by ECT researchers, and never have been, anecdotal reports such as these are disregarded, saying they are not scientific evidence. However, it’s a Catch-22.

Patient complains and the treating physician dismisses the complaints saying the patient is either mistaken or so mentally ill, she doesn’t know what’s going on. In that way, the ECT industry has managed to disregard decades of complaints.

Kalinowsky and Hock wrote in their 1952 textbook that “All patients who remain unimproved after ECT are inclined to complain bitterly about their memory difficulties.”

The trend today has been to accept a few token stories about memory loss, provided the person says ECT saved my life. If the entire report is negative, i.e. it didn’t help and left me with damage, it goes back to the person being too mentally ill to understand what’s going on, or worse, simply a liar and troublemaker.

Additionally, anecdotal reports are acceptable when written as case reports, or  when promoting the value of ECT. All of a sudden they count. Yet when ECT survivors try to draw upon their own experiences, you hear “Those are anecdotal and don/t mean anything.”

I’ve lost count of the anecdotal reports that I receive in email via the website I run. Obviously those can’t be said to be representative of the overall population of ECT users, but I do believe there is value in anecdotal reporting, especially when it seems that complaints will be continually ignored. Although I’ve never actually tabulated the emails I’ve gotten over the last few years or tried to count who had what, the majority of them talk openly about the devastating memory loss, the lack of resources for recovery, and dismissal by their doctors – even when they say ECT saved my life.

When I did a small study called Voices a few years ago, I was stunned to find that many patients become frustrated after ECT and their doctor’s rejection of their complaints…so frustrated that 75 percent of those – even those who reported good outcomes with ECT’s relief on depression – have moved on to a new doctor. Some of course left psychiatry altogether, but the majority became so angered that they found new doctors.

So we come back to the issue that there are all of these self reports and very few are listening. The FDA has its collection of reports that resulted when they considered reclassifying the devices. But I’m not sure that the role of the FDA as a regulatory agency is the most appropriate place to collect oral histories and anecdotes.

What I would like to see is a central database where people can share their stories, good and bad. It’s important that all voices be heard and that no one’s story be rejected or ridiculed. It’s an idea I’m considering on my own, simply because it needs to be done….kind of an ethnography of electroconvulsive therapy patients.

Finally, a lack of research in the area of recovery troubles me the most and it should be a priority. The needs of ECT patients are unique – not only do they have to continue the quest to keep depression away, they have needs that are not recognized by most.

The most common complaints after ECT are:

Inability to remember learned materials, and difficulty in relearning, or in learning new skills
Inability to concentrate on the job
Amnesia

There are many anecdotal reports of persons who had thriving careers, but post ECT have forgotten their skills.

There must be recognition from the medical and support communities of these problems, as well as research into recovery methods.

As it is, ECT patients use a system of trial and error, finding techniques that work. Sometimes they connect with others and share ideas.

I compare the recovery process to that of someone who has lost a limb. Once the deficits are recognized and accepted, the person must find ways of coping and find ways of favoring areas of their thinking processes that have not been affected. When a person loses a limb, it takes time to adapt and to find ways of managing without that limb. Eventually, the person learns to work around limitations and to find methods to assist in getting back to everyday life.

There are areas in ECT research where problems are still not recognized, despite 60 years of consistent reports and complaints. We must begin to recognize and accept that these problems do exist before we can take the necessary steps to correct the deficits in research.

As a beginning step towards data collection and better understanding of this complex issue, we need a reporting bill similar to that in the state of Texas, and we need it on a federal level. This is something that both sides of the controversy can sign onto and the very idea of a reporting bill should not be controversial. It should be matter of fact and acceptable to all.

Second, we need to address the gaps in research studies in the area of animal research and the effect of ECT on the brain. These studies should be done by a team of researchers that include scientists from outside the field of ECT, using experts from the field of neuroscience.

Third, we need to do a better job of studying memory deficits, and not limit the research to superficial testing. The testing should be rigorous and should also include researchers from outside the field of ECT who fully understand the complexities of memory.

Fourth, we must find a way to compile anecdotal reports to give credibility to the unheard voices of ECT. Instead of ridicule, ECT consumer/survivors demand respect for their experiences, and they deserve to be heard. This information must be made easily available to those considering ECT so that they’ll have a variety of viewpoints upon which to draw and make a more informed choice.

Fifth, we need to find ways to encourage independent consumer/survivor research, to bring together mentors from the research community and to drive research in areas that reflect consumer/survivor values.

Finally, we need to commit resources to the study of recovery for ECT patients. We must recognize the unique needs and find ways to provide rehabilitation and tools for recovery.

Comments (2)

CherylApril 27th, 2010 at 9:55 am

Did you ever set up a central database where people can share their stories, good and bad about ECT?

I think it should be banned. I was shocked to hear it still goes on.

odzywkiSeptember 30th, 2011 at 5:18 am

Rattling clear site, thankyou for this post.

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