Monday, August 3, 2009

Shocked

Several weeks ago, I read an article in the Huffington Post by Dr. Mark Goulston.1 Dr. Goulston described his work in 1986 with a suicidal, late-stage Parkinson’s patient who stepped back off the ledge after receiving electroconvulsive therapy (ECT).

Because I have Parkinson’s disease, I read this post with particular interest. Near the end of the article, my interest turned to shock. Dr. Goulston noted, almost as an aside, that with ECT, not only did the patient’s depression lift—his motor functioning improved as well.

I was diagnosed in 1997. Since then, I have become a Parkinson’s news and information addict. Yet never before had I heard that ECT might be effective in treating motor symptoms of Parkinson’s. How could I have missed this?

I dove into the Internet and discovered that over the last 50 years or so, psychiatrists reported cases in which ECT helped Parkinson’s sufferers not only with depression, but also with motor symptoms. Some of these psychiatrists called for controlled studies to learn more about the effects of ECT on PD, what risks ECT would pose, and what conditions and practices would maximize ECT’s benefits and minimize risks.

Where, then, were the controlled studies?

Hunting for research on ECT, I discovered there is shockingly little to be found. In 2003, authors of a review of articles on ECT and PD (1990-2000)2 concluded:

“ Overall, a substantial amount of data support the positive effects of ECT on the motor symptoms of Parkinson’s disease. However, almost all of these data are from case reports or cases series, with only one randomized controlled trial in the literature. This, together with concerns over side effects, may raise doubts among neurologists. Further research in collaboration with neurological colleagues should be encouraged to address these concerns, as ECT may be a viable option that is acceptable to many patients.” [emphasis mine]

Authors of a meta-analysis of the literature (1980-2005)3 on ECT stated:

“…ECT can produce statistically significant effects on motor function in PD….. For ECT, although there was a relatively large and significant effect size, we considered the low number of studies to be a limiting factor, and therefore avoid any definite conclusions about this method of brain stimulation in PD.”

So 20-plus years after Dr. Goulston’s patient picked up his life again, PD patients are not equipped to weigh the risks and benefits of ECT. In fact, neurologists aren’t even talking about it. The research is insufficient. Why is that? Because not enough studies have been done to make anyone want to do further studies. The evidence on ECT is largely anecdotal and that simply isn’t enough.

It’s a perfect circle, a Catch-22. And it leaves patients with only one option when, inevitably, medications fail and symptoms worsen – DBS surgery, which involves drilling holes in the skull, pushing wires through the brain, and depending on batteries to keep a constant current pulsing through wires inserted under the skin. If it comes to the point that I need that, I’ll do it. But why has this procedure been deemed worthy of risk, worthy of study, worthy of being paid for by Medicare, while ECT, simpler, noninvasive, and far less expensive, has been shunted aside?

Two weeks’ worth of reading has not turned me into an expert on ECT. But what I learned convinces me that there is a very good chance that ECT offers another choice, an additional station along the way where patients can stave off, for a little while longer, the ravages of this disease.

Only research will tell us if this choice pans out.

This research is long overdue.

References

1. Goulston, M. Living through wanting to die. The Huffington Post, July 9, 2009. http://www.huffingtonpost.com/mark-goulston-md/living-through-wanting-to_b_228811.html

2. Kennedy R, Mittal D, and O’Jile J. Electroconvulsive therapy in movement disorders: an update. J Neuropsychiatry Clin Newurosci 2003; 15:407-421.

3. Fregni F, Simon DK, Wu A, and Pascal-Leone A. Non-invasive brain stimulation for Parkinson’s disease: a systematic review and meta-analysis of the literature. J Neural Neurosurg Psychiatry 2005; 76:1614-1623.

photo by Philip Schexnayder on flickr.com

7 comments:

DataBug said...

I don't know if this has anything to do with the lack of research on ECT, but I do know that ECT was pretty much the treatment of choice for virtually any neurological affliction into even the sixties, often causing more harm than help. Remember One Flew Over the Cuckoo's Nest? I wonder if, in their haste to discard a method that had been harmful when used too broadly, doctors have ended up frightened to do any further research into this medieval-sounding but potentially game-changing treatment.

P.S. This is Ted, by the way--your son-in-law-in-law.

Kathleen said...

Thanks for your comment, DataBug aka Ted! Yes, ECT has a controversial history and nobody really quite understands exactly how it works. There is a pretty substantial amount of data regarding risks and benefits. That is what I plan to write about in my next post.

Fran said...

The lack of research is puzzling. Could some be going on that you aren't aware of? I would hope so, otherwise not investigating this is incomprehensible. Reading the NY Times this morning I noticed a website you might want to check out, if you haven't already. It's www.clinicaltrials.gov - it's a government registry of clinical trials, as you might imagine by the name. It was mentioned in an article on the difficulties of developing anti-cancer drugs, because recruiting drug trial participants is difficult.

Kathleen said...

Thanks Fran--the clinical trials site is very useful. Yes, it is hard to find subjects to participate in clinical trials. A recent JAMA article posits that patients have an ethical obligation to participate in trials because the resulting knowledge is a public good available to all. IMHO as long as our health care system is profit-driven and riddled with inequities, that argument is a mighty hard sell.

Rebeck said...

I wonder if the clinical trials website turned up anything related to Parkinsons. And has MJ Fox's high profile resulted in the development or pursuit of any good research angles? Rebecca

Kathleen said...

Hi Rebecca—

The Parkinson's research landscape is filled with efforts to improve drugs currently in use—-making time release versions, for instance. Of course we all hope for more substantial benefits through work in areas such as stem cells and neurotrophic factors.

MJFF, as I understand it, funds a lot of work to add to basic knowledge about of PD.

Patients are waiting and hoping for a real breakthrough, one that will stop disease progression and restore lost functioning.

In the meantime, we welcome anything that can alleviate symptoms, even temporarily and incompletely. It is distressing to think that ECT might ease symptoms yet is being ignored.

Kathleen

Michelle Seitzer said...

What an interesting post. And I agree with DataBug re: a hesitation to use something that might be helpful when it had been overused/abused in the past. I hope they can do more research/controlled studies...if it's something that could truly benefit those with Parkinson's, such research would be well worth the investment.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.