AlignMap

Epiphany Du Jour – Training To Be An Effective Patient That Begins Post-Diagnosis Begins Too Late¹

Question #1: What is the likelihood that an individual reaching  adulthood in the US will eventually find himself or herself in the role of a patient?
Answer #1: Almost certain, according to my calculations.²

Question #2: When and how does one typically learn to how to operate effectively in the patient role?
Answer #2: While  learning to operate in the patient role theoretically takes place whenever one visits a clinician for any reason, that process, which could charitably be called “learning by doing,” is a hit or miss affair that routinely receives little attention until one is concerned about the possibility of or diagnosed with an anxiety-provoking disorder.³

Question #3: What is the worst possible way and the worst possible time to learn to operate effectively in the patient role?
Answer #3: See Answer #2.

A Illustrative Scenario

Consider this example: An asymptomatic,  intelligent 34 year old woman with only minor interactions previously with organized medicine is diagnosed with breast cancer during a routine exam.  Her doctor informs her (accurately) that any delay in treatment increases her risk. She is immediately faced with the decision of whether or not to follow the primary recommendation for surgical intervention and, if she agrees, which of the 2-4 possible procedures she wishes.  If she declines  the surgical procedures, she must decide which, if any, of the alternative treatments she will undergo. She also has to deal with the impact the diagnosis and treatment will have on her spouse, her children,  her job, her friends, and her extended family.

This is, I submit, a suboptimal situation for learning to be an effective patient, the intensity of ones motivation notwithstanding.

The Solution – Teaching How To Be An Effective Patient In The K-12 Curriculum

An explicit goal of elementary, middle, and high schools is preparing children to undertake  adult tasks. Thus, in addition to  learning basic math, writing methodology, and reading comprehension, students also take courses in sex  education, nutrition, consumer skills, and managing relationships.

Learning the skills necessary to be an effective patient, such as what to expect from, how to communicate with, and when to seek help from healthcare professionals, how to understand medical reports, pharmaceutical ads, and other pertinent printed and online literature, … , is at least as important as learning about the risks of unprotected sex or the need to save a portion of ones paycheck against future needs.

Making “How To Be An Effective Patient”  part of the K-12 school Health curriculum is no panacea, but it seems a rational and promising alternative that is likely to substantially improve the current “just too late” methodology.⁴

Credit Due Department: The photo portrait atop this post was taken by Bhernandez. The schoolroom photo was taken by Rob Shenk

1. Author’s Note: Patient Effectiveness Training is part and parcel of the system I (ambiguously) envision as a replacement for the current, non-functioning patient compliance model. The focus of this piece, that such training should take be part of the public education curriculum, is, admittedly, a tangent, and I am willing to stipulate that I am devoting a post to the notion less because of its impact on treatment adherence rates (although that impact could be significant) than because I think it’s a clever, useful idea. … and, it’s my blog.↩
2. Almost all of us who make it to adulthood in the US (or Canada or Britain or Germany or Scandinavia, …) will sooner or later be a patient. The exceptions are at most a tiny fraction of the population: those who consciously and conscientiously  avoid doctors because of reasoned principles, irrational fears, religious beliefs, cultural mores, or psychological disorders and also manage to avoid membership in organizations such as the armed forces that insist on involvement by clinicians and remain  healthy enough that they are not forced into healthcare (e.g., taken in an unconscious state secondary to a cardiovascular accident  into an emergency department) until they die.↩
3. In addition, there are educational processes that are even more sporadic and variable in quality: individuals may, for example, read articles about “how to be a good patient,” attend a workshop at the local hospital about “how to communicate with your doctor,” or receive information through various ad campaigns recommending that viewers ask their doctor about using one or another medication.↩
4. This is one of those ideas that seems so obvious that one assumes it is being done already. And maybe it is, but I can’t find any discussion of it.↩

Nocebo-Effect Noncompliance: When Telling The Patient Enough May Be Too Much

Power of Suggestion: When Drug Labels Make You Sick¹ is an article on  placebo and nocebo effects,² the sort of piece that appears regularly in the popular press,with little to surprise anyone familiar with clinical practice.  It is, however, a useful stepping-off point for a consideration of the impact a clinician’s manner of imparting information about treatment to a patient has on that patient’s response to the treatment and, inevitably, that patient’s adherence to the prescribed treatment regimen.

The following excerpts contain the core issues:

Research has shown that expecting to feel ill can bring illness on in some instances, particularly when stress is involved. The technical term is the “nocebo effect,” and it’s placebo’s evil twin. “It’s not a psychiatric disorder — it’s the way the mind works,” says Arthur Barsky, director of Psychiatric Research at Brigham and Women’s Hospital in Boston.

… in one 1960s test, when hospital patients were given sugar water and told it would make them vomit, 80% of them did. Studies have also shown that patients forewarned about possible side effects are more likely to encounter them. In a study last year at the University of Turin, Italy, men taking finesteride for enlarged prostates who were informed that it could cause erectile dysfunction and decreased libido were three times as likely to experience such side effects as men who weren’t told.

… Doctors may unwittingly foster placebo or nocebo effects by how enthusiastically or warily they discuss medication. “Physician communication with patients is the closest thing to magic. It gets communicated in incredibly subtle ways—a flash in the eye, a smile, a spring in the step,” says Daniel Moerman, an emeritus professor of anthropology at the University of Michigan-Dearborn. Doctors may also subconsciously transmit an expectation of pain. In a double-blind study of 60 patients who had wisdom teeth extracted, when clinicians thought they might be administering a medication that could heighten the pain instead of lessen it, the patients reported much more pain—even though they were really receiving placebos.

Should doctors discuss all those risks with patients, or can they be a self-fulfilling prophecy? It depends on the patient and the drug. “Patients should be made aware of anything that could be dangerous, so they don’t keel over on the street,” says Flavia Golden, an internist in New York City. “But if it’s minor like a headache, I don’t mention it. It’s better to keep the channels of communication open and say, ‘Call me if you have any problems.’ “

Patient-Clinician Interaction, Treatment Recommendations, Nocebo Effect, and Adherence

For the purposes of this exercise, I ask readers to stipulate that (1) the placebo and nocebo effects operate as described in the excerpts and can cause some patients to suffer significantly negative symptoms and (2) a significant number of patients will not follow a recommended treatment regimen if they suffer those significantly negative symptoms.

Now, you’re the physician recommending medication XYZ to your patient (as long as we’re stipulating, let’s also stipulate that this is the optimal medication for this patient, who will be 5 times more likely to recover from the affliction being treated than would be the case if a placebo were taken). Like most medications, there is a reasonable chance XYZ will cause some minor side-effects in a large fraction of patients and a relatively small chance it will cause a severe side-effects in a few patients.

The question is what you tell the patient and how you tell the patient about about (1) the likelihood of a favorable outcome and (2) the side-effects, including which side-effects (all, none, some) and the likelihood of those side-effects.

Keep in mind that, because of the placebo and nocebo effects, an optimistic appraisal of the outcome delivered enthusiastically is likely to cause some patients to achieve that outcome and encourage the patient to pursue the recommended treatment. Similarly, every side-effect you list for some patients will increase the likelihood they will suffer that side-effect and, as a result, increase the risk they will terminate the treatment. Of course, you can modulate that effect by how you describe the chances the side-effect will occur or how severe it may be.

It’s important to understand that the information you offer is not benign. The choice you make to tell your 100 patients taking drug XYZ that it can cause debilitating fatigue means, taking the nocebo effect into account, that some of those patients who would not have suffered debilitating fatigue will do so only because you chose to tell them about this potential side-effect. Further, some of those affected by this side-effect may well refuse to continue drug XYZ because they may think debilitating fatigue is worse than their original ailment, i.e. some patients will drop out of their optimal treatment plan only because you chose to tell them about this potential side-effect.

Are you proud of yourself?

Of course, you could decide not to tell any of them about the risk of debilitating fatigue. That’s fine – if you don’t mind hiding potentially important information from your patients and, in the process, perhaps violating ethical canons. Heck, if there is a hot shot plaintiff’s lawyer involved, you may find a jury of 12 of your peers have decided you’ve committed malpractice by not providing informed consent.

Naturally, you believe the patient must always be a partner on the clinical team so you can’t revert to the paternalistic Dr. Welby methodology of telling each patient only what you think that particular patient needs to know. And, to be fair, even if you were into retro-medical practice, unless you’re a TV doctor with good scriptwriters you won’t have more than a hunch which patients you should tell what.

Incidentally, that bit in the excerpt, “But if it’s minor like a headache, I don’t mention it. It’s better to keep the channels of communication open and say, ‘Call me if you have any problems,’ ” works better as a sound bite than as a general practice. It turns out that lots of patients are seriously miffed when they discover from the doctor taking call for you over the weekend that the headache that kept them from going to Thanksgiving dinner was a side-effect you knew could happen but chose not to tell them.³

Notice that the decision about how to inform a patient about the side-effects of a prescribed medication resolves rather straightforwardly into a forced choice about how you will manipulate the patient. Because of the placebo-nocebo effects, the reaction of some patients (and, no, you can’t tell which ones) to data, even when its transmission is seemingly neutral, is dramatically distorted. Consequently, what the clinician chooses to tell – or chooses not to tell – a patient about the side-effects of a single medication has a necessarily exaggerated impact (at least for a large number of patients), making that task, that may take place a dozen times in a morning clinic, incredibly challenging. Discussing a complex, comprehensive treatment plan for a disorder like diabetes is exponentially more difficult.

The Answer

Hey, don’t look at me – I’ve been trying to figure this out for 25 years.

The only answer I’ve come up with so far is the same declaration that opens this post:

Clinicians can choose how, not if,
they influence patient compliance

1. Power of Suggestion: When Drug Labels Make You Sick  by Melinda Beck. WSJ November 18, 2008.↩
2. A convincing argument can be made that the terms, “placebo effect” and “nocebo effect,” as they are used in the referenced article and in this post are ambiguous and counterproductive, but this is beyond the scope of today’s effort. See Stewart-Williams, S. & Podd, J., “The Placebo Effect: Dissolving the Expectancy Versus Conditioning Debate”, Psychological Bulletin, Vol.130, No.2, (March 2004), pp.324-340.↩
3. I suspect the doctor quoted would agree that this is not a one size fits all sort of tactic. Quotes for articles in the lay press are seldom complete and typically are lifted out of context.↩

Adherence: The Silent CV Risk Factor,¹ presented by Dr. Keith C. Ferdinand,  Dr. Lars G. Osterberg,  and Dr. Roger S. Blumenthal, is a solid review of the basics of adherence (although special attention is directed, as the title indicates, to cardiovascular disease, almost all of the principles  are transparently applicable to compliance in general) but also offers insights in areas not typically covered by analogous reviews.

Rather than attempt to characterize these usually neglected points that are discussed in this piece, I will provide a few examples.

For instance, while the presenters trot out the familiar stats to indicate the extent of the problem,

… greater than $100 billion are wasted annually due to nonadherence; 125,000 unnecessary deaths are due to nonadherence; and of all medication related hospital admissions, 33% to 69% are due to poor medication adherence.

… they also include the much less commonly addressed point that practitioners rarely have an organized approach  to compliance:

We did a pre-survey and results demonstrated that nurse practitioners and physicians’ assistants are more likely than physicians to change treatment strategies to improve adherence. However, 74% of health care providers do not have an active adherence program.

Similarly, they do a nice job explalining the adherence versus compliance issue, defining concordance, and distringuishing betweeen adherence, compliance, and pesistence.

… researchers have recently defined adherence and compliance a bit differently, compliance meaning the day-to-day way patients take their medications from drug prescription as prescribed by the physician; persistence meaning the time they are on their medications, and it actually may discontinue before the actual prescription is ended. Adherence has been used to include the overarching term of compliance and persistence in medication-taking behavior. The British terminology actually uses a term called concordance, which implies more of a patient-centered approach in that the prescription is really a contract between the patient and the physician and that both are really responsible for the medication-taking. The National Council on Patient Information and Education has really now adopted the term adherence as the proper term because it really implies a more patient-centered approach.

They also make a interesting point about the specialist (cardiology is discussed but many other specialists would face the same conundrum) who has to be concerned about compliance in a patient who might only be seen by that practitioner once each year.

One of the challenges that we have in cardiology is that in the past, we used to be able to see certain patients more frequently, but now, almost always, Keith, patients need to get referrals from their primary care provider to see us. It is harder as a cardiologist to provide some of that reinforcement that I think the patient needs. And with the proliferation of managed care and everybody trying to cut costs, we have a struggle of trying to make sure we have gotten all the information we can from the visit to the referring physician and the patient. It is a lot harder for chronic diseases for the primary care physician to pay as much attention sometimes about lipid lowering medicine, blood pressure lowering medicine when the patient has come in for acute issue.

That is interesting: preauthorization may help keep costs down but it may actually lead to greater nonadherence.

I have always felt that when we see a specialist, it is always helpful to have some goals set not just from the medication point of view in terms of what the blood pressure and lipids would be, but also what they are doing from a lifestyle point of view. With the system we have now with the preauthorization, it is often a lot harder for us to see a nonacute patient back within a period of a few months. Many times, the best we can do is maybe see him back in a year.

And consider this economic insight:

One of the biggest issues that we are all struggling with and now, of course, we are dealing with the bailout of financial firms here, is the issue of money. Many of the medications that we prescribe to patients that are still on patent may be $2.00 or $3.00 a day, so the issue of needing to save money, and many times, physicians do not think of perhaps a less potent generic alternative. It would be nice to have a 50% LDL reduction in everybody, but if we can give a generic statin that may give us a 35% or 40% reduction and have people work on their lifestyle habits, that may work out just as well if they take the medicine and may work out better.

Over-reliance On Patient Education

The presentation does fall short in a few areas.  The discussion of a chart showing “Reasons For Not Taking Medication,” for example, should have included mention of how this data was collected (patient self-report I surmise) and, if it was by self-report, the possibility that the patient might not have provided accurate information.

My major concern, however, is the overwhelming faith demonstrated in patient education as a compliance enhancer.

… one of the things that I guess we are all trying to do is figure out ways for people to better understand why certain medications are prescribed and try to make these clinical trials that are the basis for the guidelines be more understandable. I have often thought that it would be helpful if the patient got a copy of the notes that we send to the referring physicians, but many times, that is not as easy for our office staff to do. But I think it just points to the fact that to improve adherence and compliance, we need to do a better job of making sure the patient understands why the medicine is prescribed and can relate to the clinical trial data, if there is any, related to blood pressure or cholesterol about why this is important.

While this may be a matter of emphasis, I believe that a teaching presentation such as this should acknowledge that some patients who fully understand the illness, the treatment, and the implications of compliance to their cases will nonetheless fail to adhere to the prescribed regimen unless other steps are taken.

Summary: Worthwhile Review Of Basics Plus Bonuses

That said, I return to my contention that this review is head and shoulders above the usual run of competent offerings and well worth reading, if only for the succinct, helpful summary of the Federal Study of Adherence to Medication in the Elderly (FAME).

In addition, one can earn  CME credits² for completing Adherence: The Silent CV Risk Factor.

1. The presentation is available as slides with transcript or can be viewed in a  slides/video format↩
2. See CME Info↩

Alignmap In Cites Goes Video

A plethora of compliance-pertinent videos are now available online.  I’ve begun posting some of these flicks on this blog’s tumblelog counterpart, AlignMap In Cites.

Videos selected for the AlignMap In Cites Patient Compliance Theater meet one or more of the following inclusion criteria:

1. Presentations of patient compliance research that briefly and clearly present highlights of findings
2. Tips targeted to patients or clinicians that may improve adherence
3. Demonstrations of and infomercials about devices that ostensibly enhance adherence – or at least amuse me.
4. Testimonials from patients and pontifications from clinicians that provide useful information, reveal pertinent attitudes that could have a positive or negative impact on patient compliance, or surpass a difficult to articulate but easy to recognize threshold of – oh, let’s call it eccentricity.
5. Anything else that strikes my fancy.

The following videos in the list that follows have been posted to AlignMap In Cites in the past 24 hours. The links below go directly and only to the post indicated. These posts can also be accessed en masse by going to the AlignMap In Cites home page and scrolling back through the chronologically listed posts.

Now Showing
The AlignMap In Cites Patient Compliance Theater

Infomercial about the e-Pill Cube Pill Timer and Pillbox My first impression, based on the rather complex explanation of its operation, is that the device might be better positioned as a test of cognition rather than a convenient medication dose reminder.

Tips to enhance adherence to medication regimen Nothing unusual but potentially helpful ideas about remembering to take ones medications. Targeted to patients.

Medication compliance survey: Moderately self-serving presentation and recommendations from The National Community Pharmacists Association.

Infomercial about the e-Pill MD2 dispenser

Psych Medication Non-compliance: A patient’s own story of medication noncompliance.

Adherence to ARVs — Part 1 and Adherence to ARVs — Part 2: Poignant patient educational video from Baragwanath Hospital, Soweto, South Africa  promoting adherence to anti-HIV ARV drugs.

How to Improve Patient Compliance in Dyslipidemia Diagnosis: Medscape produced video report on study affirming value of electronic patient reminders.

Importance of Patient Compliance in Healing: Presented by a clinician and targeted to patients. Excerpt: So, do what the doctor tells you. Try to be compliant. Try to get better. And if you need our help, we’re Baker Chiropractic. We put patients first.

One of my patient compliance alerts this morning linked to Drug Compliance: Barriers to Care at Endo Blog where I found the attractive chart atop this post along with a discussion of the data it displays. Those findings are summarized in this excerpt:

From my reading of the post, it appears that the focus is on extracting from the chart (and the article whence the chart originated) practical recommendations for diabetic patients to enhance their ability to follow their treatment regimens. And from that perspective, the post is on target. The author advises, for example,

I’ve issued similar suggestions to my own patients, after learning (the hard way, of course) not to assume that patients were not born with the knowledge that orders for prescription refills could not always be issued immediately nor could the pharmacy always immediately produce a bottle of pills.

So far, so good. But I do want to use this post as an example of the risks of summarizing a study’s findings too concisely or, as I suspect is the case here, to present that summary in a public forum with only one segment of the potential audience in mind.

The Alternative Interpretation

On tracking down the source of the chart from the legend on its lower left corner, I recognized the article, Barriers to Medication Adherence in Poorly Controlled Diabetes Mellitus,¹ as one I had previously read and, in fact, had referenced one conclusion, the link between difficulty reading the text of the prescription and poor control of diabetes as indicated by the A1c biological marker, in my own post, Check The Fine Print For Noncompliance – Part 1.

Excerpts from the study’s abstract follow:

The problem lies not in what was written about the study but in what was not written.

Specifically, the following information wasn’t available to those who read only the post about the study:

1. The patient population was selected in part because of their poor control of their diabetes, as signaled by A1c values of 9% and above
2. Data re adherence and the challenges to adherence were collected exclusively by self-report
3. As noted in the abstract, “Self-reported adherence was not related to A1c control,” but “Taking more than 2 doses of DM medication daily and difficulty reading the DM medication prescription label were significantly associated with higher hemoglobin A1c.”

Now, the absence of that information has little or no impact on the advice offered to patients in the post. And the phrase, “according to patients, … ,” does indicate the source of the information.

Nonetheless, that declaration of results, while hardly egregious, is problematic, as can be seen by comparing the statement as written to a more complete version of the information.

As written:

More complete version:

My contention is that those two versions may have significantly different impacts, at least on certain readers.

And that is the point: public blogs are – well, public. Posts can be read by, among others, patients, clinicians, reporters, elected officials hoping to find justification for public policy changes, students writing doctoral papers, nurses from Africa caring for HIV patients who deny they are infected, lawyers working the compliance angles on behalf of their clients, colleagues with points of view congruent with the content, colleges with opposing points of view, marketing folks from pharmaceutical companies, and other bloggers.

That is only a partial list of those who have contacted me after reading something at AlignMap.com; that list is also the reason I write – and urge other bloggers to write – with the assumption that their readers will come to their posts with an extraordinarily wide variety of experience with and knowledge of the topic and with an even wider range of motivations.


Footnotes

1. Peggy Soule Odegard and Shelly L. Gray, Barriers to Medication Adherence in Poorly Controlled Diabetes Mellitus, The Diabetes Educator, Vol. 34, No. 4, 692-697, 2008↩

Emergency Room Confusion – The Study And The Findings

Today’s New York Times includes E.R. Patients Often Left Confused After Visits, an article by Laurie Tarkan that focuses on a study published in the Annals of Emergency Medicine, Patient Comprehension of Emergency Department Care and Instructions: Are Patients Aware of When They Do Not Understand?.

Excerpts from the abstract of that study follow:

The Times article elaborates:

78% Of ER Patients Misunderstand Or Lack Discharge Instructions

Based purely on subjective recall of my own limited experience working in Emergency Departments and my treatment of patients who had been referred by Emergency Rooms, I would have guessed at least 60-70% of these clients would demonstrate serious misunderstandings of their discharge instructions. I suspect other clinicians would report similar speculations with some variance based on the presence or absence of a patient population whose native language is different than that used by local clinicians.

Consequently, the finding that 78% of patients in the study left the ER with at least one significant misunderstanding re their discharge instructions falls into that category, familiar to ongoing readers of these posts, of Old News, relegating the chief value of the study to confirmation rather than revelation, the enthusiasm of the New York Times notwithstanding.

On the other hand, this article does raise an important question pertinent to patient compliance:

Is The Problem Noncompliance Or Health Illiteracy Or Both?
And Why Should Anyone Care?

Dr. Eric Coleman, Director of the Care Transitions Program at the University of Colorado (not involved in the study), contributes this observation to the Times article:

In fact, the classic definition of medication noncompliance by Sackett and Haynes is “failure or refusal to comply with treatment recommendations.”² Extrapolating from medication noncompliance to patient noncompliance in general, it would seem that failure to follow ER discharge instructions, whatever the reason, qualifies as noncompliance.

The following may well be a recycled rant for return readers – steel yourselves.

The concept of patient compliance, as used today is not clinically relevant as a management tool because the multitude of factors that have an impact on adherence transcends complexity, commingling disparate categories, primary causes and collateral effects, and generally making a hash of it.

At best, noncompliance is a statistical phenomenon, a nonspecific symptom. If a patient’s body temperature exceeds a given point, that patient has a fever. If another patient demonstrates less behavioral inhibition than a certain percentile of the population, that patient is clinically impulsive. A patient does not take a specified amount (often a seemingly arbitrary percentage) of the total medications prescribed; that patient is noncompliant. Now, symptoms are obviously useful in some ways. They may warn the physician, for example, of an impending catastrophe. Patients spiking a fever of 108, patients so impulsive that they attack bystanders for trivial slights, and patients who take far too many or far too few pills are potential disasters. Bu the fundamental benefit of symptoms is their role in the service of diagnosis and determining etiology of health problems. In this aspect, noncompliance is a no-show. The difference between fever and impulsiveness on one hand and noncompliance on the other as symptoms is that few clinicians would be content to end a workup of a patient once “fever” or “impulsiveness” are identified.

At worst, noncompliance is a truism: patients are noncompliant because they don’t adhere to treatment recommendations; those patients don’t adhere to treatment recommendations because they are noncompliant.

The real clinker, of course, is that exploring a clinically irrelevant concept by pursuing ever more well-designed, ever larger studies and expending more intellectual effort developing models of that concept’s operations will result – if all goes well – in more elaborate and precise explanations that are also clinically irrelevant.

Who knows? Maybe that is part of the reason there have been no significant strides forward in the field of compliance in the past 100 years despite the thousands of articles, books, and reports dedicated to the theme.

Footnotes

1. Oversimplification in the service of stukffing material into the column inches allotted it has resulted, I believe, in a false dichotomy, i.e., that patients suffer from either noncompliance or health illiteracy. Aside from health illiteracy being commonly considered a cause of noncompliance, I would wager that even if all of these patients had been educated to the point of expertise, a large percentage would nonetheless succumb to one or another of the other 42,823 varieties of noncompliance.↩
2. Haynes RB, Taylor DW, Sackett DL: Compliance in health care. Baltimore: Johns Hopkins University Press; 1979↩

Patient Education Goes Bollyhood

Once again, AlignMap takes patient education from the sad and drab ghetto of mainstream materials to the fab world of entertainment.

Check out Tracey Ullman’s conceptualization of patient counseling performed by the pharmacist.

The Safety Issue and The Personal Medication Record

While my recent posts on the Personal Medication Record focused on its utility as a tool to decrease unintentional noncompliance,¹ the medication list also serves as an important safety function, as explained in What Medications Does Your Patient Take? Enhancing Medication Safety in the Outpatient Setting, an article published on the Institute for Healthcare Improvement web site.

I’ve included some excerpts to give a flavor of the essay:

Additional Sources

The Massachusetts Coalition has developed materials closely related to What Medications Does Your Patient Take? Enhancing Medication Safety in the Outpatient Setting. These include letters to patients, providers, and pharmacists to give patients and families useful tips for using medications wisely, and to inform providers and pharmacists about specific actions required to ensure patient health and medication safety:

Med List Letter to Patients
Med List Letter to Providers
Med List Letter to Pharmacists

Footnotes

1. The Alignmap posts dealing with Personal Medication Record include
   • Everyone Needs A Personal Medication Record
   • Choosing The Right Personal Medication Record
   • Compiling The Personal Medication Record
   • How To Create and Use A Personal Medication Record
   • Test-Driving The Personal Medication Record

   ↩

Patients Unable to Provide Names of Their Medications

This post started out as another of those How About That? items.

This news release version of a study to be published in the November issue of the Journal of General Internal Medicine resolves to a single punchline,

Commentary

Those familiar with AlignMap posts on health literacy¹ will not find that result (nor the additional fact that the “number jumped to 60 percent for those with low health literacy”) surprising.

This is a specific area within patient compliance – noncompliance by error – that, it would seem, could be directly addressed by treatment plan presentation protocols, technology, and didactic efforts. And, in fact, I have come across some promising ideas lately.

Consequently, the next AlignMap posts will deal with pragmatic tips for decreasing medication noncompliance by error with methods now available.

How about that?

Source: Name that drug: Many patients can’t

Foonotes

1. AlignMap posts focusing on health literacy include, among others, including Health Literacy , Medication Leaflets, and The Gap Betwixt, Persistent Themes: Health Literacy and Incentive Plans, Health Literacy: A Clear Problem Without A Clear Solution, and Healthcare Illiteracy Linked To Higher Mortality Among Elderly ↩

Health Literacy and Mortality Among Elderly Persons
David W. Baker, MD, MPH; Michael S. Wolf, PhD, MPH; Joseph Feinglass, PhD; Jason A. Thompson, BA; Julie A. Gazmararian, PhD; Jenny Huang, PhD. Arch Intern Med. 2007;167:1503-1509.

The Study

The study looked prospectively at 3260 Medicare managed-care enrollees in 4 US metropolitan areas who were interviewed in 1997 to determine their demographic characteristics, chronic conditions, self-reported physical and mental health, and health behaviors. Participants also completed the shortened version of the Test of Functional Health Literacy in Adults. Main outcome measures included all-cause and cause-specific (cardiovascular, cancer, and other) mortality using data from the National Death Index through 2003.

Results

Commentary

Adherence to treatment for chronic illnesses such as asthma, diabetes and heart disease can be difficult in the best of circumstances. For those with literacy problems, following a treatment plan that goes beyond “take the blue pill twice a day” may prove impossible without extensive and expensive assistance. And, as this study indicates, the inability to follow treatment instructions is deadly.

While campaigns to end illiteracy may be a long term solution, the immediate problem of millions of individuals who today cannot comprehend written medical information should prompt further work in alternative means of communicating this information.

Different Ways to Describe the Benefits of Risk-Reducing Treatments Peder A. Halvorsen, MD; Randi Selmer, PhD; and Ivar Sonbo Kristiansen, MD, PhD, MPH. Ann Intern Med, June 19, 2007; 146(12): 848-856

Knowing Number Needed to Treat May Help Patients Consent to Treatment Interventions News Author: Laurie Barclay, MD; CME Author: Charles Vega, MD; Medscape: June 20, 2007. CME¹

The Study

Excerpted from abstract:

Commentary

Summarizing their results, the study’s authors write

While the difficulty of communicating statistically valid information about possible outcomes to medical professionals as well as patients has long been recognized, this study is valuable for its emphasis on the impact this process has on treatment decisions made by the patient.

On the other hand, I am not convinced that the specific results (e.g., that using the number needed to treat results in higher consent rates than postponement of events) has been proven by this study’s use of hypothetical scenarios rather than actual clinical situations, especially when the patients’ understanding of the scenarios is unclear.

I do agree with the editorial by Harold C. Sox, MD, in the same issue of Annals of Internal Medicine,

Because it is beyond the legitimate scope of the article, an important issue on which this editorial statement touches but does not elaborate is the ethics of framing information. It is by no means certain, for example, that increasing the proportion of patients agreeing to treatment is necessarily the “good outcome.”

Footnotes

1. CME Valid for credit through June 20, 2008. Credits Available: Physicians – maximum of 0.25 AMA PRA Category 1 Credit(s) for physicians; Family Physicians – up to 0.25 AAFP Prescribed credit(s) for physicians. See CME Information↩

HIV InSite:
HIV/AIDS Information Source

HIV InSite, developed by the Center for HIV Information at the University of California San Francisco, aspires to provide free, anonymous access to “comprehensive, in-depth HIV/AIDS information and knowledge,” including an extensive Knowledge Base and other on-site materials as well as thousands of links to to other web sites.

HIV InSite Treatment Adherence References Index

On a single web page, Adherence to HIV Antiretroviral Therapy: Related Resources, HIV InSite lists annotated links to selected pertinent

• Knowledge Base Chapters
• Journal Articles
• Policy Reports, Papers, and Briefs
• Presentations, Interviews, and Roundtable Discussion
• Online Books and Chapters
• Newsletter Articles
• Slide Sets
• Program Management Materials
• Patient and Community Education
• Patient Information Sites

This index is available at
~Adherence to HIV Antiretroviral Therapy: Related Resources~

Commentary

The resources listed are extensive and many are immediately recognizable as frequently cited and highly regarded references.

That said, some improvements could increase the value of this index.

• Updating The Listing: This morning, the Resources web page carries the legend, “Content reviewed July 2005,” although many of the articles were published in 2006. That apparent discrepancy should be clarified. More significantly, an accurate “Last revised” date should be listed for the benefit of those using this index. If no articles published in the past year are listed, one shouldn’t have to guess whether that is the consequence of a judgment that older references serve the reader’s purpose better than more recent publications or the result of the list lying dormant for that time. Also, some links are broken (e.g., Adherence to Potent Antiretroviral Therapy, in: Guidelines for the Use of Antiretroviral Agents Among HIV-Infected Adults and Adolescents)
• More useful annotations: Currently, many annotations are no more than citations. The reader should have at least enough information to know why a given article or reference is listed. For example, the first item is Antiretroviral Drug Profiles, a heading which leaves the information’s pertinence to adherence a matter of speculation. Do those profiles contain compliance rates? Are they provided to inform one of factors that might affect adherence, such as side-effects or dosing schedules?
• Provision of criteria for selection: The range of material listed is so varied that the qualification standards are not apparent. Even if these were chosen based on a group’s personal preferences, that should be known to the reader.
• Notice of special costs: While the mission of InSite specifies “free” access, some of the links connect to brief abstracts of limited utility while the full articles are available only to those with subscriptions or willing to pay extra fees (e.g., A stress and coping model of medication adherence and viral load in HIV-positive men and women on highly active antiretroviral therapy (HAART).). That is acceptable, but it would be helpful if those fees were mentioned in the link’s annotation.
• Differentiation of commercial vs academic sites: Some of the links are connected to for-profit web sites (e.g., The annotation of the link to e-pill.com is limited to “Offers a range of interesting medication adherence/compliance tools for patients”). Again, this is acceptable, but it would be helpful if that were indicated in the annotations.

None of these issues negate the value of the materials listed at ~Adherence to HIV Antiretroviral Therapy: Related Resources~; taking these relatively simple steps, however, would further enhance the utility of this resource page.