Showing posts with label lab rat. Show all posts
Showing posts with label lab rat. Show all posts

Giving thanks for Jerod Poore

Jerod Poore is the walking, talking, tweeting, posting wikipedia of all meds psychiatric and neurological. His manifesto: At Crazymeds [his original website] we make psychiatric and neurological conditions (AKA brain cooties) our bitches with evidence-based medicine and a healthy dose of gallows humor.

When I caught brain cooties fourteen years ago, Jerod was the first person I found who gave me genuine information. When the docs turned my brain into a chemistry experiment, Jerod told me what was happening to it.


That's the sketch I drew of my brain on drugs. Not the drugs they warn you about, but the drugs they scold you for refusing to take. Prozac, Celexa, Remeron, Cymbalta, Effexor.

Recovery Redefined

 The Medical Model Failed

We got sick.  Well, we were already sick.  We sat in the doctor's office, while the doctor quizzed us about our behavior, sorting out where we belonged in the DSM's symptom silo.

Next the doctor enrolled us in The Chemistry Experiment, prescribed the chemicals that were supposed to reduce those behaviors.  Not fix our brains, mind you.  Nobody has been testing whether these chemicals fix our brains, just whether they change our behaviors.

Dopamine - Can't Live Without It

Dopamine -- It's what gets the lab rat turn to left at the T, race down the hallway, make a flying leap at an 18" wall, snag the ledge with its little claws, and struggle over to fall to the other side and win those four food pellets.  If you artificially deplete the lab rat's dopamine, it will turn right at the T and settle for the two pellets lying on the floor.

Dopamine -- It's what got you out of bed this morning and to work on time.  Or if your dopamine levels are depleted, you pulled the covers over your head, while your spouse pleaded with you to go back to your therapist.

Dopamine -- It's what got you out of the house early to redeem that two-for-one mocha coupon at your favorite coffee shop on your way to work, and as long as you were there, might as well order that banana chocolate chip muffin.  Bananas are good for you, right?  Or if you just never got into the habit of that particular coffee shop, and it's not on the way to work, and you really like the French Roast you have at home anyway, then your dopamine never got you fired up, and the coupon went to waste.

Weighing Costs and Benefits Part V -- Down and Dirty Algorithm

SE + NE + $$$ + STG + TR = STC.

E#PT X NSR = STB.

STB TO STC = ODDS OF SUCCESS


There it is, the Prozac Monologues Down And Dirty Algorithm, to weigh your costs and benefits for medication or any other treatment for any mental illness, or any other medical condition, for that matter.  Click on the first and second lines.  They will take you to the posts that develop the formula.

Can you believe we finally made it?

We started with the:

Manifesto of a Lab Rat. 


I am a Lab Rat.  Yes, I am.

The Manifesto begins there.


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

What I mean by free-range lab rat is this: 

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

Your doctor tells you to weigh your costs and benefits, but gives you no way to do so, other than insufficient information + gut + desperation = noncompliance, if you don't come up with the same answer as your doctor.

What we need is an algorithm: logical rules that we can apply to objective data to solve a problem.

This algorithm does not exist.

So as an interested party, a very interested party, given that my body is the test tube, I decided that my contribution to this chemistry experiment would be the algorithm.

The problem we want to solve is this:

Do I Want To Put These Chemicals Inside My Body?

This task has continued over several posts this fall, interspersed with a few sick leaves and vacation days.  Click on costs and benefits to follow the whole development.  (The first post is at the bottom, dated August 19, 2010).

What To Do With The Algorithm

The resulting algorithm can be applied not only to the chemicals you put in your body, but any other form of treatment as well, talk therapy, aerobic exercise, yoga, Chinese medicine, acupuncture, even aroma therapy, should you choose.

You can compare the results of the cost/benefit analysis of different treatments, and do the same with various combinations, when you can find the numbers.  Which admittedly, you cannot for any of these that do not get Blue Cross Blue Shield reimbursement.

There are numbers out there for talk therapy and aerobic exercise.  But doctors do not usually use the word therapy for anything other than chemicals or electro-convulsive therapy (ECT) or any of those new-fangled electrical interventions.  That is the context in which you are told to weigh your costs and benefits.

For the most part, I have used antidepressants as examples.  One out of every ten people in the United States is taking them right now.  So this would be the most common application, among psychotropic medications.

It was helpful to look at chemicals as I developed this algorithm, because they are the form of treatment with the greatest costs and greatest variety of costs:





dizziness and confusion,





insomnia and fatigue,



weight gain, irritability, sexual dysfunction,  irritability.




So this is what you do when you use the algorithm to weigh your costs and benefits -- you compare two numbers, STC (Short Term Costs) and STB (Short Term Benefits).

And how do we get those numbers?

Remember,

SE + NE + $$$ + STG + TR = STC.
E#PT X NSR = STB.

The abbreviations increase the confusion quotient, and thus make it look scientific.  Here is a translation:

Side Effects (SE) plus Not Effective (NE) plus Money ($$$) plus Stigma (STG) plus [lack of] Trust (TR) are your costs (STC).  These costs are based on the reasons people give for discontinuing their medication.

Efficacy Given The Number of Present Trial (E#PT) times How Many Would Not Experience Spontaneous Remission Unless They Took the Medication (NSR) are your benefits (STB).

Did you like my illustrated tour of the previous posts?

And Where Are We Supposed To Get Our Data?

They ought to be provided to you by your doctor, who has told you to weigh your costs and benefits.  Except for money, stigma and trust -- you have to come up with your own odds that you will quit taking your medication because you can't afford it, you are afraid for your reputation, or you do not trust your doctor.

They ought to be provided to your doctor by the drug reps.

But they are not.

So you have to do your own research.

I think the algorithm would make a fabulous app.  The numbers could be regularly updated, from the latest research by scientists not funded by the companies that sell these chemicals.

I claim copyright, by the way. 

Long Term Costs And Benefits Are Missing

Notice that I refer to short term costs and benefits.  Some will object that I left out good reasons to take meds: the difference that meds make to how quickly another episode occurs (relapse rate), how long various approaches take to work (time to remission), how medications affect things like brain mass, suicide risk.

Others will object that I left out good reasons not to take them: the possibility that medication might accelerate the natural progression of the disease, the possibility that the diagnosis is off and you will flip into mania or hypomania, liver damage, the consequences of weight gain, such as heart disease and diabetes, suicide risk.

Someday I will do a post or two on that suicide risk issue.  There is a lot to say about that.

Well, this algorithm is complicated enough and took five posts already.  This one has that i-Pod potential.  The one that includes all those other issues will take more gigabytes.

STC versus STB give you the odds.

Once more I repeat, they do not give you your decision.  There are additional personal factors that influence or even override logical rules, objective data, and problem solving.

Personal Factors:

You have used up your sick leave, your vacation time and your family leave for this year and next, and your boss will fire you if you don't start taking meds.

Your wife has issued a similar ultimatum.

You can't get out of the loony bin any other way.

You are desperate.

You have the knife to the wrist.

Like I said, it is your decision.  I am merely your humble servant.  Who does occasionally buy a Powerball ticket.

How Does The Algorithm Work?

Let me give you a personal example.

When I first took Prozac, Eli Lilly's website said that it had helped 70% of the 55,000,000 who had already taken it.  I didn't know anything about spontaneous remission or the effect of which trial this was.  So STB = 70.

Meanwhile, none of the side effects (SE) reported went above the 15% range; the odds that it would not be effective (NE) were 30 out of 100; it was already generic, and I could afford it ($$$); stigma (STG) was not an issue for me; and I had total trust (TR) in my doctor.  So STC was 15 + 30 + 0 + 0 + 0 = 45.

That meant (with the information I had) that the odds for Prozac were 70 to 45 in favor.  And I could put off therapy.  No brainer.

Next up -- actually, five keep trying's later, we had moved on to a psychiatrist who prescribed Effexor.  Crazy Meds says: for deep, despairing clinical depression that needs to respond to the standard tweaking of the three most popular neurotransmitters, Effexor XR (venlafaxine hydrochloride) often pulls people out of the abyss.  By then, the deep, despairing abyss -- that would be me.

My doc said I get good results from Effexor.  She didn't say how good results translated to a number,.  (That's case studies, by the way -- not research.)  But she did tell me to weigh my costs and benefits.  By then I knew that most antidepressants have about the same effectiveness level, which I took to be around 40%.  I didn't know it mattered that I was on my sixth go round.  Odds for benefit, STB = 40%

She also gave me the usual side effects, because I asked.  Since insomnia was a major issue for me, and we had run through a number of sleep aids, she said that the insomnia risk (SE) was 15%.  Not effective odds (NE) would come in at 60 out of 100.  Since she didn't ever answer phone calls, and I knew I couldn't stop this med without help tapering off, and I was wary of her by now, I grilled her on how to discontinue without her help.  Trust, lack thereof, (TR) was in the 40% range.  STC was 15 + 60 + 40 = 115.

With Effexor, my odds were 115 to 40 against.  Not so good this time.  However, desperation overcame gut instinct.  So I kept trying.

The rules of the algorithm work, but the results are only as good as the objective data.  What if I knew then what I know now?  Without going into the whole story, and by tweaking numbers actually available: 

Prozac -- 

STB = 40 (E#PT) X .8 (NSR) = 32.
STC = 30 (SE) + 60 (NE) + 0 ($$$) + 0 (STG) + 20 (TR) = 110. 

110 to 32 against.  I still had issues with therapy (nothing to do with any therapist I have ever known, by the way).  And being over-educated, I am on the compliant side.  So I would have given it a shot. 

Effexor --

STB = 10 (E#PT) X .8 = 8.
STC = 34 (SE) + 92 (NE) + 0 ($$$) + 0 (STG) + 95 (TR) = 221.

221 to 8 against.

The numbers for Effexor come from the STAR*D study, and were available at the time I started taking it.  But I didn't know that.  STAR*D's original conclusion was that after two antidepressants have been tried, subsequent results are dismal, and more research for better medications should be a priority.

Since then, a jillion articles have been written about how STAR*D was a lousy research design that cooked the books in way favor of the chemicals at every step, starting with the selection of subjects.  Click here for my posts that reference STAR*D.  But Google it for for what the scientists say.

Anyway, 221 to 8 against -- I would have given it a pass.  Even I could tell the books were cooked.  And I got so much better after I went off it.

And So The Manifesto Of A Lab Rat Concludes

Of course, your results may vary.  Just remember, it's your test tube.




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Photo "Angry Father" by Akapl616.  Permission is granted to copy
under the terms of the GNU Free Documentation License
i-Pod family photo by Matthieu Riegler, licensed under
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photo of Warren G. Harding in public domain
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Attribution-Share Alike 3.0 Unported licence and modified
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The Chemistry Experiment: Muppets Version

When your doctor, pen poised over prescription pad, tells you to weigh your costs and benefits, you will have next to no information with which to do so.  Over the last several and coming weeks, we are constructing an algorithm to help you comply with your doctor's instruction to make this calculation.  But remember, the best this algorithm can do is give you the odds.

After you calculate your odds, you may decide to proceed with this chemistry experiment and put the chemicals at issue inside your body, your own personal test tube.   At that point, you no longer have odds.  You have results.  Your doctor may not expect this, but once you have results, you will weigh your costs and benefits again.  You will make a new decision, this time with new information.

This is a good thing.  This is what people who conduct experiments do.  They use the information they have gained from one experiment to move on to the next.

This week's post is brought to you from the laboratory of Dr. Bunsen Honeydew, with the aid of his assistant Beaker. My thanks to Beaker in particular, for his contribution to science.



photo by Linda Bartlett, in public domain

OMGThat'sWhatTheySaid -- Noncompliance

Before I move to the costs side of Weighing the Costs and Benefits, I pause to consider the concept of noncompliance.

Noncompliance is not one of the best candidates for the OMG! Award, because I cannot point to specific usage -- it is ubiquitous.  On the other hand, it is precisely what this award is about, going to the heart of how language frames thought.  In this case, the word simultaneously names and creates a relationship between consumer and provider.

I don't particularly care for the terms consumer and provider when it comes to health care.  But I use them here, where they distinguish those who consume, literally put pills inside our mouths, from those who fill out those little slips of paper that provide the pills.  Providers replaces pushers, a term I used in a fit of pique last week.  This week, I have resolved to be more polite.

Consumers are told to weigh our costs and benefits.  When we comply with these instructions and, having done so, decide that the costs exceed the benefits, and therefore decide not to consume, then providers call us noncompliant.  What exactly is communicated here?

What is noncompliance, anyway?

I went to the dictionaries.


According to Webster's New World College Dictionary, noncompliant means failure to comply; refusal to yield, agree, etc.

MedicalNet.com puts it this way: Noncompliance: The failure or refusal to comply: the failure or refusal to conform and adapt one's actions to a rule or to necessity.

Don't you hate it when one word is defined by another word that still needs to be defined?  I went back to Webster's, and got these alternatives. 

COMPLIANCE
1: a -- the act or process of complying to a desire, demand, proposal or regimen, or to coercion; b -- conformity in fulfilling official requirements;
2 : a disposition to yield to others;
3 : the ability of an object to yield elastically when a force is applied.

So.  One has a desire, demand, proposal, regimen or official requirements, and may have access to force or coercion.  The other fails, refuses, or does not yield.  I wonder which is which? 

Scientists Study Noncompliance

Providers are disconcerted when consumers fail to consume, and spend a lot of time trying to figure out why.  By the way, this link goes to a review of literature by Alex J. Mitchell, a consultant and senior lecturer in liaison psychiatry at the Leicester Royal Infirmary in the United Kingdom, who receives no compensation from pharmaceutical companies.  I often link to reviews of literature.  Their authors read a jillion studies, including ones to which I do not have access.  Then they summarize the highlights of whatever consensus may have come from these studies.  Reviews of literature put a lot of information in one place.  Mitchell has 59 footnotes (okay, not a jillion -- I exaggerated), in case you want to look up the research behind a particular point.

So scientists speculate, do research, write articles, hold conferences and  train residents, all in efforts to increase compliance.  Their hypotheses about the causes of this behavior include inaccurate beliefs about medication, lack of insight into ones illness, lack of education in general, cognitive impairment, weight gain, sexual dysfunction, and poor patient/doctor relationship.

Mitchell even developed a flow chart to categorize the behaviors of patients: full, partial and excess adherence, intentional and unintentional non-adherence, for external or internal reasons, and various combinations of these.  Not telling your doctor that you have stopped taking your medication is called covert discontinuation, and in other places, covert noncompliance -- that word again, this time with the naughtiness of covert.

A friend noticed that Mitchell missed a category on his flow chart, the consumer who is compliant with other medications, but consistently, though inadvertently, forgets one particular medication that she thinks is the source of uncomfortable side effects.  That could be covert internal unintentional partial non-adherence.  Or would it be covert internal intentional partial non-adherence, covert here meaning that her intention is undisclosed to herself?  The flow chart matters, because having divided noncompliant consumers into subgroups, then they test different strategies to bring different subgroups back into compliance.

Some notice the non-PC nature of the word noncompliance.  While most articles I found use the term, occasionally, as in Mitchell, I come across non-adherenceNon-adherence is supposed to imply a mutual agreement between two parties about what the treatment regimen will be.  Other articles use the terms interchangeably, recognizing a fig leaf for a fig leaf.  After all, presumably the consumer and the provider have agreed together about the regimen to which the consumer will adhere.  Only notice, if the consumer does not adhere, then he/she has violated an agreement, or broken a promise.  Still naughty.

Matthew Keene, who serves as an adviser or consultant to GlaxoSmithKline, Cephalon and Pfizer, might have merited the OMG Award on his own, for Confusion and Complaints: The True Cost of Noncompliance in Antidepressant Therapy.  But why pick on just him, because, like I said, this language and weltangshauung (as they say in philosophy -- it means world view) permeates the literature?

Why Don't Consumers Consume Their Antidepressants? -- What the Providers Say

Mitchell cites a study indicating that 10% of those prescribed antidepressants never show up at the pharmacy at all.  Keene's figures are that 28% quit within the first month, 50% within 60 days, and only 28% are still in compliance at six months.  Keene asks, Why do patients prematurely discontinue antidepressants, medications that may improve and perhaps even save their lives?  His answer -- one of the 3 C's of noncompliance: confusion, costs, and complaints. 

Confusion, costs and complaints.  Notice that each of these is patient-centered.  He didn't say incoherent, financially foolish and picky.  But they are implied in the rest of the article.  Notice also that he did not describe the phenomenon from the patients' perspective.  He could have said inadequate communication, ineffective or intolerable medications and inaccessible health care and still preserved his clever alliteration.

Why Don't Consumers Consume Their Antidepressants? -- What the Consumers Say

What if patients wrote these articles, or were even consulted?  Actually, they have been consulted.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick, most commonly nausea, headache, drowsiness, and increased anxiety.  Well, duh.

I don't know.  Has it occurred to anybody besides me that we could solve this puzzle and put all that research time and money to better use if we gave the scientists a turn as the lab rats?

Another 44% consumers report that they discontinue because the medication is not effective.

That leaves 16% unexplained.  I will get back to them when I discuss costs more thoroughly.

I sorted through lots of these studies before it finally occurred to me to compare rates and reasons.  Noncompliance at six months is 72%.  Back to NIMH's STAR*D study, when trial subjects received compensation, free medical care, extensive information and regular support, antidepressants were ineffective for 50% of those who took them and intolerable for 16%, a total of 66%. -- That was the first trial.  By the third trial, medications were ineffective for 83% and intolerable for 26%, more even than the total.

What I want to know is just how many people take antidepressants when they make them sick and/or don't work anyway?  I personally know three.  Consistent with research findings, that better educated consumers are more compliant, these three have among them a BA, a Masters and a PhD.

Is there something going on here that is not about good medicine?

Rethinking Consumer Noncompliance

Psychiatrist Allan Showalter, Rethinking Patient Noncompliance, challenges the premises behind repeated and repeated research on noncompliance, a behavior which found across other diagnoses, not to mention life issues ranging from flossing to portfolio diversification, as well.  Here is the video of an Iowa Hawkeye football player on a motorcycle, one week before the game with our biggest rival.  A football player.  No helmet.  Despite repeated pleas of Kirk Ferentz, the Hawkeye coach.

I do recommend that you follow Showater's link for the novelty of his thinking.  One example: Nothing in [the definition of noncompliance] implies a moral obligation on the part of the patient to follow those recommendations or to the clinician who makes those recommendations to enforce them.

Countertransference

Yuval Melamed and Henri Szor, The Therapist and the Patient: Coping With Noncompliance, focus on the relationship between the patient and therapist as the source of noncompliance, rather than taking patients at their word.  On the other hand, they use a word that I did not find in any other article.

Countertransference.  Okay, ignoring the definition that includes the word transference, [again -- so irritating when dictionaries do that], Webster's defines countertransference as the complex feelings of the psychotherapist toward the patient.

Melamed and Szor think that noncompliance arouses reactions in therapists who feel that this behavior exemplifies a lack of trust in them and in the corpus of knowledge they represent.  I think that takes us part way there.

It is the therapist's job to manage the dynamics of countertransference in what is an unequal power relationship. That management would include not allowing the therapist's feelings toward the patient to misinterpret the patient's experience as hostility and thus misdirect the intervention.

I have not found evidence that providers of medication ever explore the impact of their own feelings on their treatment of consumers, at least in the arena of noncompliance.  Countertransference is a regular part of psychotherapists' training.  If it is ever mentioned in medical school, none of the literature gives evidence that the lesson sticks.

Weighing the Costs and Benefits -- Progress Report

Sorry about all the numbers in this post.  I have not found in the research any effort to measure the costs side of you have to weigh the costs and benefits that is not filtered through the concept of noncompliance.  So the algorithm will suffer from research that is compromised by its initial assumptions.  Thta is why we had to start with the OMG Award.

Next week, the Muppets will give us a break, while my brain does a bunch of number crunching.

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photo of woman pointing taken by David Shankbone,
used by permission under the Creative Commons 
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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.

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