Showing posts with label remission. Show all posts
Showing posts with label remission. Show all posts

Weighing the Costs and Benefits Part III -- How to Measure Costs

The doctor said, You have to weigh your costs and benefits.  Today we continue to figure out how to do that, based on more than gut feeling and desperation.  We are building an algorithm, logical rules applied to objective data to solve a specific problem -- in this case, do you want to put these chemicals inside your body?

On August 19 I listed the factors to consideration, benefits, costs, and other issues that affect how these are calculated.  On September 2 I listed the immediate benefits of medication, and gave you a Down and Dirty way to calculate them.  I call it Down and Dirty, because it leaves out long term benefits.  Your psychiatrist will consider this a serious omission.  But we have to start somewhere.  And desperate people have to start with a time frame they can imagine surviving.  Think about the long term benefits once you feel better, and are thinking about quitting.

Today we turn to down and dirty costs.  This is more difficult to calculate, because the research on costs is filtered through the lens of noncompliance.

When you weigh your costs and benefits, if you should happen to decide the costs outweigh the benefits, it would seem logical to give the medication a pass.  On the other hand, if the doctor recommended the medication, it was because he/she has prejudged the matter and considers the benefits to outweigh the costs.

Yesterday the pharmacy attached a piece of paper to my refill.  Every single prescribing information sheet attached to any prescription I have ever received has said the exact same words.  They come in the section on side effects.  Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.

Evidently the you in you have to weigh the cost and benefits refers to the doctor, not to you.  If your opinion differs from your doctor's, then you are noncompliant.

The Filter of Noncompliance Distorts Research

The information available about costs is filtered through this concept of noncompliance, the assumption that the doctor knows better than you.  So when they do research about costs, they are asking, Why do patients fail to comply with the doctor's more educated judgment?  The purpose of the research is to find strategies to get you to comply.

Our algorithm, on the other hand, asks a different question -- I believe a more neutral question.  How do the reasons to take the medication stack up against the reasons not to?  I do not presume an outcome, do not make any judgment, and certainly do not presume your decision.  While I am critical of the oversell, remember, I am currently conducting my own thirteenth trial!  But I have to get my information from people who have already made up their minds.

And they call themselves scientists.

Nancy Andreasen, a National Medal of Science Award winner and one of the world's leading experts on schizophrenia is studying creativity and mental illness.  Her first book on the subject is The Creating Brain: The Neuroscience of Genius.  Her initial hypothesis was that writers generally would not have mental illnesses, but that some family member would.

Andreasen's research proved her hypothesis wrong, at least the part about the writers themselves.  80% of writers have a mental illness, mood disorders being the most common.  This is called a robust finding, which means way more than might occur by coincidence.  And it goes some distance to explain the blogosphere, dontcha think?!  The way she puts it, when the data proves your hypothesis wrong, then you know you are on to something.  In other words, your presupposed ideas have not distorted the interpretation of your data.  This disproved hypothesis put her on a track that led to unexpected, new findings.

Nancy Andreasen is a real scientist.

If scientists started out asking Why don't patients take our good advice? and discovered, Because sometimes patients make better decisions, then they would be on to something.  They might even find a new track that would lead to new findings.

Why Use Noncompliance Rates Instead Of Research Results As A Measure of Costs?

Once you put the pill in your mouth, you are no longer playing the odds.  You are getting results.  Other people have preceded you in this chemistry experiment, first in small numbers in the clinical trials, and then in large numbers in the real world.

The clinical trials yield some information.  What happens in the first 6-8 weeks?  How many people experience fewer symptoms of depression?  How many people go into remission?  How many people get what sort of side effects?  How many people quit before the end of the trial, because the side effects are unbearable?  How do all of these results measure up against placebo?

The clinical trials also take place under circumstances that influence the results.  Three lead to a difference between their results and the results that people in the real world experience.

First, the trial subjects (the word for people who put the chemicals inside their bodies) may be cherry-picked.  This means they are people most inclined to get good results.  Researchers try to recruit subjects who have not tried more than one antidepressant already.  Remember, half of those who are experiencing depression for the first time recover and never get it again.  People who do not recover quickly take more medications, and get worse results with each one.

In the STAR*D study, one of the selection criteria was that the subjects had not already tried any of the meds to be tested.  Those for whom the medication had already been shown ineffective were eliminated.  Which kind of stacked the deck, dontcha think?  Other scientists do.

Second, subjects receive extensive support throughout the trial.  Monitoring itself inevitably influences the results.  When depressed people get to talk about their symptoms, it reduces their isolation and eases the pain that is part of depression.  Even if those administering the medication are trained to be neutral, subjects get better, just because somebody cares enough to ask.

Third, and most significant for our purposes, is that trial subjects receive encouragement, intense encouragement, to endure side effects and finish the trial. 

Your Results May Vary

First, in the real world, even if two antidepressants do not work, consumers are urged to keep trying.  And each subsequent trial reduces the odds that the next one will be effective.

Second, in the real world, consumers are not so carefully monitored.  They are handed a prescription and sent out the door.  Subsequent appointments get briefer and briefer.

Third, in the real world, consumers are less willing to consume chemicals that make them feel worse.  We have jobs, families, lives to live, as best we can.  Nausea, dizziness, blurred vision, anxiety, insomnia... these things make living our lives difficult.

Noncompliance rates over the course of a year measure results the real world.  My guess is that is where you live.

So, how many people have weighed the costs and benefits they experience inside their own test tubes, results, not odds, and run screaming from the door?  Or more likely, tiptoe out to exercise not overt, but covert noncompliance.

What Are Those Noncompliance Numbers Again? 

10% of those prescribed antidepressants never show up at the pharmacy at all.

28% quit within the first month.

50% quit within 60 days.

72% are outta there at six months, 78% within the year.

There are problems with these numbers for our purposes.  All the different reasons for discontinuation are lumped together.  As well, different meds have different rates of discontinuation.  For example, again with the STAR*D study, 16.3% quit Celexa in the first 60 day trial, while 45.5% quit a Lithium/Zoloft combo in the third trial.

Somebody needs to be collecting this data.  Some consumer group, looking at real world data, not the guys seeking permission to sell pills. 

And Why Don't Consumers Consume?

Regarding those first 10%, we just don't know.  We can have some fun guessing.  Top ten list, that sort of thing.  But these guesses do not add to our knowledge.  This is missing data, and we will have to work around it. 

Another 44% say they quit because the medication wasn't effective.

Here we run into a problem.  It takes a while for most of these meds to work.  We don't know how many who quit in the first four weeks could tolerate the medication, but did not give it an adequate trial.

Both providers and consumers have an interest in figuring out this number.  From the provider perspective, these early quitters might respond to a better sales job.  For our purposes, the early quitters fail to give us the information we seek to figure our own odds.

Our algorithm will have to assume that further research will provide the numbers.  Once somebody funds that consumer group.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick.  According to the clinical trials, the most common reasons are nausea, headache, drowsiness, and increased anxiety.  These side effects are more common in the 6-8 week time frame.  Eventually, consumers cite weight gain and sexual side effects as the most significant side effects.

These are the types of numbers we will crunch to create our algorithm.  Sketchy as they are, they will be used for illustration purposes, not actual calculations.

But I need another recess -- something fun next week.

Flair from Facebook
Cartoon from Microsoft images
Counseling photo in public domain
Andreasen photo used by permission
Book cover from Amazon.com

Weighing Costs and Benefits Part II: Benefits

Today the Free Range Lab Rat, yours truly, continues my extended series on the Chemistry Experiment, that effort to find the chemicals that will make a dent in the suffering of those with mood disorders.

I asked, Will it work for me?

And the doctor answered, We won't know until you try it. 

THAT is the Chemistry Experiment. 

So three weeks ago I published my

Manifesto

If I am a lab rat, I will be a free-range lab rat.

Because I am a free-range rat, I decide which experiments I am willing to try.

Of course I do.  The doctor expects me to decide.  Why else did she say,

You have to weigh the costs and benefits. 

Only -- there is no scale.  Which led me, two weeks ago to continue my manifesto.



I now insist that I contribute more to this enterprise than my body.

So I have decided to create the scale.  I call it an AlgorithmAlgorithm is science-speak for a set of logical rules applied to objective data to solve a problem.  The problem to be solved is 

Do I Want To Put These Chemicals Inside My Body?

It turns out there are lots and lots of these costs and benefits to weigh.  The numbers you get in your fifteen minute med check are abbreviated and oversimplified to the point of useless.  So this is going to take a few weeks.  I am breaking it down, one step at a time.  Like I said, a set of logical rules applied to objective data to solve a problem.  I promise as few numbers and as many pictures as possible.  Plus another musical interlude.

Two weeks ago, I made a list of factors, all the things that go into the scale.  Today we look at the good side, what the doctor calls BENEFITS.

Here goes. 

Effectiveness Rate

Weighing the Costs and Benefits Part I -- What Counts?

Manifesto

If I am a lab rat, I will be a free-range lab rat.

There.  I feel better already.

To recap from last week:

You Have to Weigh The Costs and Benefits

That is what the doctor says.

Last week I promised I would develop a way to do that.  So this week we play math games.  For the next few weeks, actually.

Now, don't freak out.  I am not going to ask you to do math.  I am going to make up some rules.  You are along for the ride.  Though do feel free to suggest better rules.  Plus, I promise lots of pictures.  And a musical interlude.

I am a rat.  I live in a laboratory, where I participate in the Chemistry Experiment.  Along with other scientists, I am trying to find the chemicals that will make a dent in my mood disorder.  Not theirs.  Mine.  Which is how I got the rat end of this job.  But because I am a free-range rat, I get to decide which experiments I am willing to try.

I now insist that I contribute more to this enterprise than my body.

PTSD: The State of Treatment

This is the second part of a series on Post Traumatic Brain Syndrome.  Let me recap last week and expand on what we know about the neurobiological mechanisms (how the brain works) of PTSD, and then discuss treatment strategies.

When something stressful happens, the brain prepares the body for action.  The hypothalamus, pituitary gland, amygdala, locus ceruleus and opioid system all release hormones to speed up respiration, raise blood pressure, reduce sensitivity to pain, all useful conditions for the proverbial fight or flight.

Under normal stressors, as soon as these hormones are released, feedback systems go into operation.  The hypothalamus tells everybody else that their job is done and they can back off.

These hormones, especially cortisol, damage brain structures, notably the hippocampus, whose job is to regulate emotion and to perform the "that was then, this is now" function.  I named it that, and am very proud of it.  My own brain has almost no "that was then, this is now" function.  Pretty much zip.

Release the Kraken!!

Well, it's one of those weeks in a remitting/recurring disease. "Release the Kraken!" -- my favorite line from Clash of the Titans, a 1981 movie to be remade and released this summer.  Oh, you gotta check out that link to the trailer!

My apologies to regular readers who are looking for a new post.  It's an interesting one, Shadows.  Maybe I will be able to write it next week.  Come to think of it, the image on the right would fit that post, too. (Anonymous, in the public domain for copywrite expiration). For now, here is a reprint from last July:

What is Depression, Anyway?

When I thought the meds would work, I didn't ask this question (referring to the title, not the caption!) Depression is a disease of the brain and also of the mind. The best results are obtained by working on both fronts. Take your meds. Talk to your therapist. Simple.

Then I discovered that the meds made me worse. Whenever I say that, I rush to say that, my experience notwithstanding, for most people they work. They can save your life. And then I rush to say, but not for everybody. If you think they make you worse, you might be right.

The rhetoric keeps shifting on this point, depending on what the speaker is selling. I
think the current prevailing stats are that the meds help half of us, harm a quarter of us, and for another quarter, they just don't work. And for most of us in any of those groups, the disease does go away on its own anyway, though it leaves its wreckage behind. But that is what I am gleaning from the research. Nobody in the scientific community has summed it up so simply.

Prozac is Talking -- Anybody Listening?

Anybody know this story?  You get a new prescription.  Responsible consumer that you are, you read carefully the PI [prescribing information] sheet.  It says, "If xx happens, call your doctor immediately."  Sure enough, xx happens.  You call your doctor, who does not call back.  After persistent calling over several days, the doc says, "Really?  We'll keep an eye on it."

The other day, I had a nosebleed that wouldn't stop.  The PI sheet says my new med can interfere with platelets, admittedly not very high on the list of side effects.  But I contacted the doc.  "Really?"  she said, "Where did you hear that was a side effect?"  My answer, "On the PI sheet you gave me."  It turned out, my blood work was fine, and the humidifier took care of the nosebleeds.

No harm done.  Right?

On the other hand, five years ago my GP had me on Prozac.  After a couple months, I couldn't sleep, was irritated, agitated, couldn't concentrate, had thoughts of harming myself and others.  The PI sheet said I should tell my doctor.  My doctor increased the dose.

Thus began a series of antidepressants, and a downward spiral that has ended with disability.

The Chemistry Experiment -- Augmentation

When I began The Chemistry Experiment, there were about twenty options out there for me to try.  I was a wuss and quit at six.  I said "no" to a fifth SSRI/SNRI, and rejected the whole class of MAOIs (Monoamine Oxidase Inhibitors) -- which were just too tempting to use as a backup plan.  Instead I headed east, and Chinese herbs got me through almost two years.  Later I returned to an antidepressant that hadn't been effective before, but at least it did no harm.  This time it helped.  Was this because I was taking Xiao Yao San as well?  Who knows.  But now it doesn't work any more anyway.

Meanwhile, there is a new strategy called augmentation.  If one med doesn't work, try combining two, an antidepressant with an anti-psychotic, anti-convulsant, mood stabilizer, atypical anti-psychotic.  Suddenly the number of possibilities is up to forty.  That doesn't actually give you 1600 potential combinations, because if you combine MAOIs with most of the others, it'll kill you.  Most days, that doesn't seem like a good thing. Anyway, the number of potential trials has increased exponentially, and I am nowhere near the end of the chemistry experiment.

Mother Amygdala, Have Mercy Upon Us

Once upon a time I wanted to be a neurosurgeon. But I had this idiotic fear of science class -- it was in the water that they gave to girls in the 1950s. So I headed in another direction. Still I am fascinated by the brain, and will keep sharing the stuff that I learn about it. Today's topic is the amygdala.

Ah, the amygdala, the reptilian brain. It is among the oldest parts of the human brain, regulating memory, emotion and fear. The amygdala associates a strong emotional reaction with a piece of information to imprint that information in your memory. You remember best what you associate with strong emotion. If you walk under a tree in the tropics and a poisonous snake falls on top of you, it is highly beneficial from an evolutionary perspective to remember that tree where those poisonous snakes linger. That's when the amygdala is your friend.

OMG!!! That's What They Said! Relapse


"The goal of treatment was to maximize the number of patients achieving clinical remission because this would then render them eligible for the mood challenge." [italics added]


The winners of this month's Omgodthat'swhattheysaid Award are
Segal, Kennedy, Gemar, Hood, Pedersen, and Buis in "Cognitive Reactivity to Sad Mood Provocation and the Prediction of Depressive Relapse," Archives of General Psychiatry 63:7 July 2006.

They wanted to answer a question I asked in my last post, why does depression come back? Cognitive Behavioral Therapy (CBT) says that automatic negative thoughts cause depression. CBT is designed to make people aware of these thoughts, to interrupt and reframe
them. It is often as effective as antidepressants in treating mild and moderate depression, and better in terms of relapse rate. Nevertheless, people treated with CBT do relapse. One explanation is that CBT addresses the cognitive processes that dominate during a depressive episode, but there are underlying and ingrained thought processes that persist even in remission. Give people a list of adjectives, ask them which apply to them, and those who have been depressed but are in remission will nonetheless pick out more negative words than those who have never been depressed.

Thank You For Being My Friends

Try this experiment on yourself.  Imagine that you are standing at the base of the hill.  What do you see, smell, hear?  Put yourself in this picture.  Are you with anybody?  If so, who is it?  What is your relationship like? 

Now, tell me. How steep is the hill?  Really steep?  Sort of steep?  Not so steep? 

Friends And The Perception Of Difficulty 

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