Wednesday, April 14, 2010

Meds Compliance: The Problem Clinician

Yesterday, I raised the topic of physicians turning a deaf ear to our complaints about meds side effects. The obvious conclusion to draw is that patients will simply stop taking their meds. You don’t need a medical degree to understand that. In fact, it helps if you don’t have one.

Two and a half years ago, a psychiatrist who practices in Princeton, NJ (I used to live just outside Princeton) invited me to deliver a grand rounds to a psychiatric facility there. I was very hesitant. I’m a journalist, I explained. It’s not my place to tell others how to do their jobs.

But I had been doing my own research into meds compliance. Perhaps it would be okay, I suggested, if I were to report on my research from the perspective of a patient. The psychiatrist loved the idea, and we booked a date.

How controversial can meds compliance be, right? I mean, no one is against meds compliance. So I went back over my old research, then did some more, and started connecting the dots. Suddenly, I realized I was in big trouble. Psychiatrists came out looking worse than the patients. A lot worse.

There’s no way I can sugar-coat this, I confided to my friends. They’re going to run me out of town on a rail.

The first part of my talk - “The Problem Patient” - went over reasonably well. But I started sinking fast when I got into “Problem Meds.” Then “The Problem Clinician” went up on my PowerPoint.

Frozen silence. We’re not talking ordinary frozen silence, as in “stony cold” frozen silence. We’re talking zero degrees Kelvin silence, as in utter cessation of all molecular motion frozen silence.

What’s totally weird is they should have been rolling in the aisles. My PowerPoint slide featured a photo of Hugh Laurie from the TV series “House” snapping on a latex glove. “House” is set in Princeton. Surely, my audience would at least chuckle in knowing appreciation.

Silence. Zero degrees Kelvin silence. 

Up went a slide of Heidi Klum. “Have you ever noticed how many drug reps look like Heidi Klum?” I asked. Or Russell Crowe?

To paraphrase George Bush, I “misunderestimated” my audience.

Let’s take a look at some of the hard cold facts from my PowerPoint:
  • According to a 2002 study by Scott and Pope, 50% of  bipolar patients on mood stabilizers acknowledged some degree of medication nonadherence in the previous 2 years.
  • According to a 2007 Swedish study, 25 percent stopped taking their lithium in 45 days. The median time to discontinuation of lithium was 181 days.
  • In one of the NIMH-underwritten CATIE schizophrenia trials, no one completed the study.
  • In a 2006 long-term Zyprexa trial, nearly 80 percent of the patients on the drug dropped out.
  • A 2005 Medscape article reported that only 28% complied with their SSRIs at 6 months.
I asked the clinicians in the audience if these non-compliance rates were higher than they thought, and managed to coax out some reluctantly nodding responses.

Sending patients out the door with just a prescription is not treatment, I reminded them. (They positively hated hearing that.)

Obviously, I went on to say, a clear psychiatric disconnect exists. According to another study by Scott and Pope, clinicians felt their patients quit lithium owing to "missing highs." Patients who quit, on the other hand, cited other reasons.

At the 2006 national NAMI convention, Stephen Goldfinger MD of SUNY told his audience: “Patients will be adherent if the meds do their real job.”

I did my initial research into meds noncompliance about eight years ago when I came across a Kirsch meta-analysis (summarized in a recent piece) that revealed, amongst other things, that only 63 percent of the patients in antidepressant drug trials completed the four to six weeks these trials ran.

Curious, I began checking if these drop-out rates applied across the rest of medicine, such as cancer. So I picked a cancer med at random, Nolvadex (tamoxifen) and read that AstraZeneca had stopped a 1997 study due to 26 percent of patients quitting after one year.

Hmm, I thought. A 74 percent completion rate over one year, significantly higher than the antidepressant completion rate over a mere six weeks. Yet, this was totally unacceptable in the field of cancer. I remember reporting in a Newsletter at the time that a drug company would be touting the exact same completion rate for an antidepressant as a stunning success. Indeed, two weeks later, Lundbeck proved me right by publishing a one-year Lexapro trial that highlighted a mere 26 percent of patients dropping out of the study.

I didn’t bring this up this in my talk. What I did note was that the 26 percent Nolvadex drop-out rate almost exactly corresponded to the 21 percent Zyprexa completion rate.

Psychiatry and oncology clearly have different standards. So, are oncologists telling their patients something different? My guess is they are. I acknowledged to my audience I was speculating, but I managed to get them to sign off on this PowerPoint:

What oncologists may be telling their patients:

It's going to be hell, but there is an excellent chance your cancer will go away.

Then I showed them this PowerPoint:

What I know too many psychiatrists tell their patients:

What are you complaining about? These meds work. Something must be wrong with you. You're much better off than you were before. You need to stay on these drugs the rest of your life.

What I’m guessing the cancer patient may be thinking is this: One year of hell - if that's what it takes to get my old life back, I'm willing to put up with that.

What I know the psychiatric patient is thinking is this: This is the best you can do? You mean I'm going to have to spend the rest of my life - like this?

As Ross Baldessarini MD of Harvard told a 2006 American Psychiatric Association annual meeting: "We need to be a lot more sensitive to minor complaints."  Otherwise, "we will drive patients out of treatment."

So maybe psychiatrists need to be working off a bad news/good news script. First the bad news:

Your meds are only part of the equation. You are unique. It may take time to find the right meds and doses that work right for you. Until we dial in your meds just right, you may have to put up with significant side effects. You may also not feel like yourself. You may feel you want to quit altogether.

Now the good news:

We are going to work together on your recovery. As your knowledge and skills improve, I will be in a better position to help you. You will also be in a better position to help yourself. Trust me, there is light at the end of this tunnel.

I wrapped up my talk a few minutes later. The audience, composed entirely of clinicians, showed their appreciation by stampeding for the exits the second my lips stopped moving.


Marissa said...

interesting. i live in princeton now, the psychiatrist i see wants me to come in every couple of months, but i feel very, very uncomfortable raising any concerns with my meds.

his comment on compliance though: OCD and bipolar folks stop medication because the drugs work so well they think they are cured. I think this applies to me, but I can imagine others would want to comment on this otherwise...

John McManamy said...

Hi, Marissa. Please do raise any concerns about your meds. A good psychiatrist who listens will work with you.

Re the meds work so well: I can't speak for OCD, but I do know the bipolar meds don't work all that well. Yes, SOME of us with bipolar may go off their meds because they work so well we think we no longer have a problem. And if this applies to you, then by all means don't tempt fate.

I've observed our population going off meds for a whole variety of reasons. Sometimes we are to blame. But no matter what the reason, practically all of it stems from poor communication between doctor and patient. The doctor, in particular, does very little to educate the patient or to refer the patient to places such as support groups.

Speaking of support groups, you might want to check out DBSA Princeton which meets every Tuesday in Lambert House in Princeton Hospital. I facilitated that group for the 3 years I lived in NJ.

Wendy Love said...

This was interesting at a variety of levels. I am most interested in the point of view of the bipolar patient. I liked your 'suggested' dialogue between the patient and the doctor. You should make copies of that and send it out to psychiatrists everywhere! Certainly there are some doctors who are better than others. I believe it would help us as patients to educate our doctors as much as possible by attempting to share our symptoms and our side effects with them in hopes that they respond with understand and with an action plan. Now I know this is not always easy. I believe that my doctor visits are as much a reflection of my doctor's attitude as my own. Ultimately it is still up to us. As ill as we are, it behooves each one of us to keep our doctors informed and if they fail to respond with a workable treatment plan, then try another doctor.

John McManamy said...

Hey, Wendy. Glad you liked the article. I think we're caught in the good doctor/bad doctor paradox. The good doctors probably already practice medicine according to this script. They also actually listen to their patients. The bad doctors (who are probably in the majority) refuse to be educated, and never listen.

But it would be good if a script of this nature were part of the education of residents, who are willing to learn and are open to fresh ideas, such as actually listening to patients.

And yes - totally - it is our job to educate our docs, and find a doc we can work with.

Anonymous said...

Cheers to you ;-)

Compliance is incredibly difficult. I started trying to "trust the psych" which to me is often like a game of russian roulette, or more what I like to call "shock the monkey."

A side effect of my medication is anxiety. Guess what! I have a bit of an anxiety disorder. I got the old, it's you, not the meds routine.

I am supposed to hold out for a month. Not sure I'll make it.

And it is certainly not the hypomanic high I get off of that makes me want to quit. It's my old level of functionality I want to return to, that I know how to do. I don't know how to do the medicated me well.

My old level of functionality is really not often hypomanic, at all. Just often down, phobic, avoidant, and anxious. It really is not that huge an issue. I am functional. If my unmedicated self was delusional, heard voices, or smoked crack to function then that would be different.

My doctor says I don't feel well, and hide it well for the most part. She's right there.

I know what I can be functional at, and med taking that makes me feel different, anxious or sick, is not functional. If my original self could work, have some sort of relationships then that's what I'll return to.