Thursday, November 08, 2007

Curious about long-term drug use

A colleague of mine recently reported that, in talking with patients just after they have been prescribed a drug by their primary care doctor or specialist for a chronic condition, he found that they often do not understand the purpose of the drug and, in particular, how long they should take it. The result can be non-compliance with the regime they have been given, leading to a tapering off or discontinuation of a drug that is supposed to be taken for an extended period of time.

This perked my interest in that clearly one aspect of quality of care has to do with people's understanding of drug regimes they have been given. If a drug is really important to someone's health and poor understanding leads to non-compliance, then the result will not be good.

I am curious and would like to hear from those of you knowledgeable on this topic. Is this a common problem? Is the problem indeed a lack of effective communication between the doctor and the patient? If so, have any efforts been made by anybody to test out alternative ways of communicating this information to patients? I would guess that the drug companies out there might have studied this problem, but have doctors or insurers or Medicare?


Dino William Ramzi said...

Some academics prefer the term non-adherence, which does not have the same power implications and insinuation of blame as non-compliance. In fact, non-compliance kind of reminds me of the Borg from Star Trek "resistance is futile."

Patients generally do what makes sense to them, so it takes considerable interpersonal and communication skill to ensure good adherence and understanding of a drug regimen. However there is data that few patients remember what they were told in clinic and a recent economic analysis suggests that the lack of adherence may be rational and have some important cost implications:

I am interested in other's views as well. This is just to get folks started.

Anonymous said...

Thanks, and thanks for the correct terminology, too.

Star Lawrence said...

This raises the whole issue of health literacy. When it says take a drug three times a day, does that mean every eight hrs, including nighttimes? JCAHO is making health literacy measures a priority within the next yr or so, I believe--institutions will have to improve it or ensure it to be accredited. I am not sure of all the details. Many people do not know how to terminate a med, either. Some you can just stop if you have side effects. Others you must taper. Yes, people stop drugs. I know several people who have gotten leg pains from statins and did not want to "try" another one, but to stop. Personally, I would like to switch from an expensive eye preparation to a cheaper one and can't get anyone to tell me what it is really doing for me. On my site,, I make no secret of my skepticism about the amount of meds we are taking. Sometimes for financial reasons, or side effects, or boredom, or whatever, people self-unmedicate. Doctors say they are then noncompliant, but I wonder if that is the word.

Anonymous said...

I have chronic facial Seborrheic Dermatitis. After a referral by my Dr. I went to a dermatologist, where after a short exam, was prescribed a 1% cortisone cream. This worked to reduce symptoms to a small degree, but not to the extent that I had hoped.

So a year later, I went back to my dermatologist and he then prescribed Elidel (pimecrolimus cream 1%). The prescription has 3 refills, and it is a 30 mg tube.

The directions are, "use sparingly on affected area twice a day".

What does sparingly mean?

Reading the literature on Elidel, it seems that long-term continuous use is not recommended. What constitutes long-term continuous use? 1 year? 5 years?

So yes, there is ambiguity in the related messaging that could affect dosage and usage in my case.

Still and all, the product is working wonderfully, with about a 90% reduction in visible symptoms.

Guess I'll check back when I run out...



Michael D. Miller, MD said...

There has been some research on both non-compliance and the effects pill taking has on people's perceptions of their health. First, the more pills a day a person has to take, the less compliant they are. Generally once or twice a day pills get good (i.e. ~80+% compliance if I recall correctly), but 3-4 times a day shows a large drop off. And second, I recall reading that the more pills a day a person has to take, the worse they report their health status - and this study was done with people taking the same medicines, but some were formulated into a single pill while others had to take multiple pills, so the differences weren't because of some people actually having more medical problems... Sorry I can't cite the exact studies - I'm on the road right now.

Anonymous said...

While I have always taken my meds [long-term)religiously, it never ceases to amaze me when a friend diagnosed with the same condition tells me that they are only taking the meds until they are well then they will stop. Most of us think all drugs are like the OTC tylenol or benedryl i.e. once the symptom is over, then we no longer need the medicine. Or worse, we do not understand what the term chronic disease means. The doctor does not help at all when he does not explain in no uncertain terms to the patient that they will continue on this medication for the foreseable future until s/he tells the patient that they no longer need the drugs. The patient leaves the clinic not understanding this part... and once their sugars are back to normal for a week they decide they are cured and stop taking the medication.

I agree with Zagreus that if the patient does not understand the simple logistics of the disease and the drug and how they relate to him, chances are they will not comply with the doctor's orders. Simply scaring the patient into taking the drugs will not work. After all, the fear will diminish if they are still alive 12 months down the line.

Anonymous said...

From a patient stand point - doctors should give a "discharge instruction" type sheet whenever they are prescribing medication for short or long term use ... and not just a standardized form with a few boxes checked. Patients need something concrete that they can refer to both when they get home, 2 weeks later, and then 2 months later, all to double check that they are doing it right.

And preferably for elderly patients and others that may be taking multiple pills from multiple doctors (such as my dad who is taking 27 pills a day at the moment) the PCP should provide an updated reference sheet describing which pills should be taken at what time. Preferably, this should include both a text listing of the drugs, dosages and frequency, as well as some sort of visual/calendar representation.

Of course - nice convenient, standardized electronic medical records would make producing such a handy reference sheet an easy task for any of a patient's doctors ... just enter the new drug, check for conflicts, and then click print to give the patient a new list.

Secondly - better labeling on medication bottles would be helpful. The prescription should tell pharmacy, which then prints on the bottle some sort of standardized term to indicate that these pills are to be taken long-term (i.e. until the prescription is changed or the doctor advises) vs. what should be taken for the short-term (i.e. pain relief after surgery or antibiotics)

Anonymous said...

I have been taking a drug - dilantin - for about 40 years for a chronic condition. I will most likely have to take it the rest of my life. FAILURE to take it results in immediate repurcussions.

IMHO, people with a genuine chronic condition have a better understanding of medication regime than a person with a problem lasting 1 - 2 months.

Anonymous said...

I just evolved a fine note about this with a brilliant software idea, but blogger dumped the text when (at bottom) I clicked "use another identity." Later on I'll try to remember it all. Grumble.

Elliott said...


In about 350 years we will have fully implemented your idea.


Toni Brayer, MD said...

Every time I prescribe a new medication I force myself to go through four points with the patient:
1. What the drug is for
2. How to take it
3. How long to take it (This is very important. How many patients think blood pressure is cured when the RX runs out)
4. What to expect from side effects

At least by religiously adhering to these 4 points, I know there will be less confusion. It takes discipline on my part.

For older patients with multiple meds (and that is most all of them!) I tape each pill on a piece of paper with instructions on what it is for and how to take it. They have a page of real pills with instructions that are clear for family and them to read.

Unknown said...

I have what has evolved into Limbic Encephalitis (3 years) and now have to take 2 different anti-seizure drugs. This is a whole lot simpler than the market basket of meds I was on in the beginning (PS – thank you, BIDMC, for keeping me alive when I probably wasn’t supposed to make it). At first, the collection of meds (nearly 10) – their schedules and their doses -- was impossible to figure out. In fact, two senior level nurses from your hospital (friends of mine) took more than an hour to interpret what were somewhat contradictory instructions, and it was a real hassle for someone as loopy as I was at the time to get it straight. Knowing how long to continue a med or when, if ever, to taper off was always a question. Everyone at the facility does what they can to get things right and they are certainly wonderful, dedicated people; but it seems that the info provided at the time of a visit, or on the bottles themselves, is insufficient. In fact, information is often conveyed virtually as an afterthought at the very end of a visit. In my case, I found myself struggling to remember what was said (it’s a wonder I can remember anything at all). This almost got me into trouble in the beginning and apparently could have had pretty bad consequences. - AJ

Un-related issue: why in God’s name is it necessary to fill out the same (though not quite) basic information forms in every single department one visits? The forms frequently look like they were designed by gnomes, they aren’t all the same, they share some - but not all - characteristics, and they contain information that must already reside in the facility’s database. I cannot – cannot remember all of my past history every single time I visit a new department, and I know that everyone has some kind of access to a central database. Maddening! And it must waste a whole lot of time having someone re-enter data that is already in “the system.”

PS – In the grand scheme of things, I give you guys a 9++ on a scale of 1 – 10. When I figure out the smidgeon more that it would take to get to the 10 I’ll let you know.

Anonymous said...

Bravo! to Dr. Brayer on his approach to patient med. program adherence. Sounds to me like a best practice.

Anonymous said...

Dear Paul:

For several years now I have been acting as a patient advocate for friends around the country.

I am an avid medical researcher and keep up with the latest through various medical websites and nursing journals.

I think one of the reasons patient medication compliance is so poor is because the doctor simply tells the patient the pill is for high blood pressure, diabetes, etc. There is no explanation about what the consequences are of not taking the medication as prescribed.

General practice physicians are so busy trying to keep their heads above water, they simply don't have the luxury of explaining medications fully in a typical office visit of half an hour.

However, hiring RN's instead of LPN's and Medical Assistants for staff could solve the problem. A knowledgeable registered nurse is a whole lot better at explaining medications and treatment plans because it's part of the training.

It's been proven over and over that patient education is the key to compliance. And it has to be done in language the patient can understand.

When my friends tell me they are on antibiotics three times a day, I tell them they do not have to be taken exactly at 8 hour intervals.

If you're working a standard 8-hour day, take your medication before work, at your usual afternoon break time and then again before bed. Getting enough rest is as important to recovery as the medication.

If you're a stay-at-home parent and your child needs to take medication three times a day. Give it to them before school and then again when they get home from school and at bedtime. The important thing is that all three doses are worked in over a 24 hour period.

It makes no sense to wake up a child at 11 p.m. to take a medication at exactly 8 hours.

And if you even have the slightest notion that you might forget a dose, ask the physician for a different medication that requires only once-a-day or twice-a-day dosing and give it before school and at bedtime.

My childhood pediatrician, Dr. Stephen L. Madey, told my mother it is important to get in as many doses on that first day of therapy. If you get the prescription in the early afternoon, you want to get in as many doses as possible before bedtime. This knocks down the bacteria so the rest of the medication can kill it off completely.

This is commonly referred to as a "loading dose" in medical jargon. The idea is the get the blood level to therapeutic doses as quickly as possible.

People will do what they want to do in regards to medication and they have the right to refuse to take it if they wish. However, they must understand the full ramifications of non-compliance with the plan of treatment.

Hats off to Dr. Brayer. We need to clone him about 500 times!

Anna Lucas, RN, BSN

Joe Wright said...

Here's a link: "

This is one of my favorite pieces of academic writing (very short letter to PLoS Medicine) about medication adherence. Adherence research has been especially important in HIV for a bunch of different reasons, including the need to convince policymakers that investing money in medicines for poor people with HIV can yield good results.

The little article above shows the kind of creative approach that some people use to figure out how to take their medicines regularly and on time. (As the graph in the article shows, this man has truly excellent adherence to his medication regimen.) It also demonstrates the kind of research technique that some people are using to measure adherence, and to evaluate programs to improve adherence (in this case, a digital pill bottle cap which records each time the bottle is opened).


Anonymous said...

I'm an MS3 who just finished clerking at another academic institution in the Boston area. We recently started a program on the inpatient medicine wards where the clinical pharmacists take on increased responsibility for discharge medication reconciliation and patient education. Because of resource limitations, our pharmacists focus on patients with multiple discharge medications and those with a recent serious event (ie discharge instructions for a recent ACS admit). We don't have hard data yet (or at least no one is sharing it with the lowly med students) but the junior and senior residents are providing anecdotal evidence of seeing fewer return visits for medication non-adherence than in past years, before the new role for the clinical pharmacists.

Anonymous said...

I have a pretty good memory for minutiae (I judge this by the frequency with which people say 'I can't believe you remember X!' to me) but I often find that after a couple of weeks I have trouble remembering exactly what I was told about a medication or other treatment at a medical appointment. I do find it helpful to make notes during or after my appointment that I can refer back to later. In most cases unless I explicitly ask, duration of use or side effects are never discussed except for an antibiotic prescription -- in that case I usually am reminded to take the full prescribed amount.

I don't know if people would do this, but one thing that seems like it would be useful would be a medical care log book that had places for notes about medical appointments where patients could write down what they are told, and ideally have that checked by a doctor or someone before they leave. Not only does the patient have the written record, but they are actually more likely to remember without checking after going through the exercise of writing it.

In any case I think some sort of written reference is crucial for increasing adherence. And also that with the increasingly frenetic pace of primary care, the visit is concluded when the prescription is handed to the patient, rather than after the prescription has been explained. Come to think of it, I cannot recall a time in the last 4 or 5 years in which the side effects of medication were discussed with me at the time that it was prescribed. I've only received that information from package inserts or my own research.

Anyway, bottom line (in my opinion) is that face time with medical professionals is an increasingly elusive commodity, so less time is spent thoroughly explaining treatments (including medication) and the stress of trying to remember everything and understand what is going on in a compressed visit makes patients even less likely to remember what they were told.