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Source: Cohort study examining tamoxifen adherence and its relationship to mortality in women with breast cancer. C McCowan, J Shearer, P T Donnan, J A Dewar, M Crilly, A M Thompson and T P Fahey. Br J Cancer advance online publication, November 4, 2008; doi:10.1038. Link To Abstract

Abstract

Increasing duration of tamoxifen therapy improves survival in women with breast cancer but the impact of adherence to tamoxifen on mortality is unclear. This study investigated whether women prescribed tamoxifen after surgery for breast cancer adhered to their prescription and whether adherence influenced survival. A retrospective cohort study of all women with incident breast cancer in the Tayside region of Scotland between 1993 and 2002 was linked to encashed prescription records to calculate adherence to tamoxifen. Survival analysis was used to determine the effect of adherence on all-cause mortality. In all 2080 patients formed the study cohort with 1633 (79%) prescribed tamoxifen. The median duration of use was 2.42 years (IQR=1.04–4.89 years). Longer duration was associated with better survival but this varied over time. The hazard ratio for mortality in relation to duration at 2.4 years was 0.85, 95% CI=0.83–0.87. Median adherence to tamoxifen was 93% (interquartile range=84–100%). Adherence <80% was associated with poorer survival, hazard ratio 1.10, 95% CI=1.001–1.21. Persistence with tamoxifen was modest with only 49% continuing therapy for 5 years of those followed up for 5 years or more. Increased duration of tamoxifen reduces the risk of death, although one in two women do not complete the recommended 5-year course of treatment. A significant proportion of women have low adherence to tamoxifen and are at increased risk of death.

Commentary

Other than the specifics – i.e., which medication,  which diagnosis, which patient cohort, etc – there is little new information offered here.  The primary messages are clear:

• Decreased adherence (to tamoxifen in this case) is associated with decreased survival.
• Ongoing use of tamoxifen reduces the risk of death, yet only 49% of patients continue therapy for 5 years.

I had not planned to post this week, but this reiteration of the all too familiar patient noncompliance motif is just too damn sad to ignore.

Do Same Findings Hold For Patient Compliance?

Readers may recall that I recently promoted Expanding The Patient Compliance Knowledgebase by considering data from fields beyond healthcare that are potentially pertinent to treatment adherence.

With that in mind, read the following excerpts from Texts You Can Believe In¹ By Farhad Manjoo, published at Slate.com Oct. 27, 2008, mentally changing the context from political campaigns to patient compliance (don’t worry – it’s not difficult):

… you might think that automated phone calls will make a difference in the presidential race. They won’t. Robo-calls are the pyrotechnics of politics: They create a big disturbance, but they don’t have a prolonged effect. Numerous studies of robo-call campaigns show that they’re ineffective both as tools of mobilization and persuasion—they don’t convince voters to go to the polls (or to stay away), and they don’t change people’s minds about which way to vote. So why do campaigns run robo-calls? Because they’re cheap and easy. Telemarketing firms charge politicians between 2 and 5 cents per completed robo-call; that’s as low as $20,000 to reach 1 million voters right in their homes.

Compared with TV advertising, door-to-door canvassing, and mega-rallies, automated phone calls are seductive because they harness modern telecommunications technology in the service of political persuasion. …

On the surface, these texts don’t seem that different from robo-calls—they’re both automated messages and both easy to ignore. But for reasons that aren’t completely understood, text messaging is different: We pay attention to short messages that pop up on our phones.

These conclusions arise out of work by Donald Green and Alan Gerber, two political scientists at Yale whose book, Get Out the Vote: How To Increase Voter Turnout, is considered the bible of voter mobilization efforts. Green and Gerber are the product of a wave of empiricism that has washed over political science during the past decade. Rather than merely theorizing about how campaigns might get people to vote, Green, Gerber, and their colleagues favor randomized field experiments to test how different techniques work during real elections. Their method has much in common with double-blind pharmaceutical studies: With the cooperation of political campaigns (often at the state and local level), researchers randomly divide voters into two categories, a treatment group and a control group. They subject the treatment group to a given tactic—robo-calls, e-mail, direct mail, door-to-door canvassing, etc. Then they use statistical analysis to determine whether voters in the treatment group behaved differently from voters in the control group.

Political scientists have run dozens of such studies during the past few years, and the work has led to what you might call the central tenet of voter mobilization: Personal appeals work better than impersonal ones. Having campaign volunteers visit voters door-to-door is the “gold standard” of voter mobilization efforts, Green and Gerber write. On average, the tactic produces one vote for every 14 people contacted. The next-most-effective way to reach voters is to have live, human volunteers call them on the phone to chat: This tactic produces one new vote for every 38 people contacted. Other efforts are nearly worthless. Paying human telemarketers to call voters produces one vote for every 180 people contacted. Sending people nonpartisan get-out-the-vote mailers will yield one vote per 200 contacts. (A partisan mailer is even less effective.)

Meanwhile, pinning leaflets to doors, sending people e-mail, and running robo-calls produced no discernible effect on the electorate. Green and Gerber cite many robo-call studies, but the most definitive is a test they ran during the 2006 Republican primary in Texas. Gov. Rick Perry recorded a call praising a state Supreme Court candidate as a true conservative. The robo-call was “microtargeted” to go out only to Perry supporters—people who’d be most open to his message. But as Green and Gerber show, Perry supporters who received the call reacted no differently from those who’d been kept off the list. They were no more likely to vote, nor, if they voted, to vote for Perry’s candidate.

These findings create an obvious difficulty for campaigns: It’s expensive and time-consuming to run the kind of personal mobilization efforts that science shows work best. Green and Gerber estimate that a door-canvassing operation costs $16 per hour, with six voters contacted each hour; if you convince one of every 14 voters you canvass, you’re paying $29 for each new voter. A volunteer phone bank operation will run you even more—$38 per acquired voter. This is the wondrous thing about text-messaging: Studies show that text-based get-out-the-vote appeals win one voter for every 25 people contacted. That’s nearly as effective as door-canvassing, but it’s much, much cheaper. Text messages cost about 6 cents per contact—only $1.50 per new voter.

… I joined Obama’s text list around that time. (I would have joined McCain’s text message list as well, but he doesn’t have one.) Since then, I’ve received two or three messages a week from the Obama campaign. A typical one: “Help Barack. Tell your friends & family the last day to register to vote in CA is this Monday, Oct 20th! Visit VoteForChange.com to register NOW. Please forward.”

The texts reminded me to watch the convention and the debates and to donate money to the Red Cross when Hurricane Gustav hit. In September, Obama asked me to text him my ZIP code. I did, and now I get location-specific messages—alerts to phone banks and debate-watching parties in my area, reminders of registration deadlines in my state, and appeals for me to volunteer in neighboring states. The messages are rendered in a friendly, professional tone (they refer to the candidate as Barack) and have been free of both fundraising appeals and any kind of negative campaigning.

The beauty of text messaging is that it is both automated and personalized. This is true of e-mail, too, but given the flood of messages you get each day (no small amount from Obama), you’re probably more attuned to ignoring e-mail. Text messages show up on a device that you carry with you all day long—and because you probably get only a handful of them each day, you’re likely to read each one.

This is especially true when the message seems to have been tailored to you specifically—Obama’s often are. The campaign knows a lot about me: At the least, it knows that I live in California, and because I joined the text-message list in order to learn the V.P. pick, that I’m fairly interested in politics (and therefore likely to vote). It’s possible that they might know even more; given my ZIP code and my phone number, they could potentially have tied my text-message account to my voter registration file, allowing the campaign to send me messages based on my party registration, whether I usually vote by mail, and whether I sometimes forget to vote. (It doesn’t appear that the campaign knows what’s in my registration file, though; I’m registered as a permanent absentee voter, but the campaign hasn’t asked me to mail in my ballot yet.)

Because text messages allow for such precise targeting, it seems likely that over the next week the Obama campaign will direct its appeals to voters in battleground states, especially first-time voters that the campaign has registered during the past year. In 2006, political science grad students Aaron Strauss and Allison Dale studied how newly registered voters responded to text-message reminders sent out just before the election. The text messages increased turnout by 3.1 percentage points. Strauss says there’s a simple reason why: “The most prevalent excuse for registered voters who don’t cast a ballot is, ‘I’m too busy’ or ‘I forgot.’ Texting someone is a convenient, targeted, and noticeable reminder for them to schedule their Election Day activities with a block of time set aside for going to the polling place.” In a post-election survey, Strauss and Dale asked voters whether they found the text messages helpful; 59 percent said yes.

Vote For Treatment Adherence

So, does text messaging research done in the political arena apply to the world of healthcare recommendations?

Well, I dunno.

For one thing, it may be a moot point.While I have surveyed the basic research on personalized text messaging as a compliance enhancement tool, I’m not well versed enough in this field to ascertain if  counterparts to the type of election campaign messaging studies described in the article already exist.

For example, that I’m not familiar with a healthcare equivalent of Get Out the Vote: How To Increase Voter Turnout by Donald Green and Alan Gerber, the how-to handbook based on well designed research utilizing control groups ²  described in the Slate article, does not mean it hasn’t been produced.

But, it seems to me that there are only a limited number of possible scenarios:

1. There are no healthcare counterparts to the type of research described for voter mobilization text-messaging.³ In this case, the seemingly obvious next step is, absent evidence that the healthcare and political fields are fundamentally different, using the work already done in the latter sphere as a basis for confirmatory studies applicable to healthcare.

2. There are healthcare counterparts to the type of research described for voter mobilization text-messaging. In this case, it becomes useful to ask how those results compare.

If voter mobilization and healthcare compliance behaviors with respect to text-messaging are similar, the likelihood that there exists a universal  set of responses to recommendations  made to individuals – whether the recommendation is to floss after meals, buy a hybrid rather than a gas-guzzler, take medication as prescribed,  vote for Ralph Nader, buckle up, read the AlignMap blog, or see the new Mel Gibson movie – is enhanced, as is the utility of exploring what is known about this phenomenon in other fields.

If voter mobilization and healthcare compliance behaviors with respect to text-messaging do not correlate, the key becomes investigating why those differences exist.

3. We stick with the isolationist party line, AKA the Fortress Healthcare approach, pretending that our field is so fundamentally different that it is a unique universe unto itself.⁴

1. Subtitle: “Forget robo-calls—Obama’s text messages are this campaign’s secret weapon”↩
2. I am making, for the purposes of this post,  the somewhat daring assumption that the research methodology used in Get Out The Vote and the other voter mobilization  studies is as designed as carefully  and executed as  rigorously as claimed.↩
3. Again, I’m making the assumption that the research methodology used is valid↩
4. It is also, one suspects, a unique universe in which the stars and planets revolve around a flat Earth.↩

Re Compliance Vs Adherence Vs Concordance, …

I have another instance to offer that demonstrates the significance of re-naming the same phenomenon.

In the middle of his career, contract disputes led to Prince changing his stage name¹ from “Prince” to the unpronounceable symbol shown under the middle picture in the above graphic. The press circumvented the symbol by referring to “The Artist formerly known as Prince.” The performer has since returned to the hardly prosaic “Prince” appellation although sardonic sorts will still, on occasion, refer to him as “The artist formerly known as ‘the artist formerly known as Prince.’”

Note the transformations wrought by the shifts in names.

1. For the record, Prince’s given, non-stage name is Prince Rogers Nelson↩

Abe Lincoln¹

What Does Abraham Lincoln Have To Say About The Uncivil War Between Compliance and Adherence Proponents?

Another quotation pertinent to the contentiousness over the appropriate name for the phenomenon most clinicians call patient compliance has occurred to me. This one is attributed to  Abraham Lincoln. More about the provenance later.

In most of the myriad versions used today in sermons, debates, business presentations, and political speeches, Lincoln is confronted with a difficult situation in which the decision seemingly rests on the interpretation of a linguistic nuance. Lincoln ponders, then asks the individual pressing him for a response how many legs a dog would have if one called the dog’s tail a leg.

The questioner, apparently the only individual in western civilization who hasn’t heard this before, does the mental arithmetic and answers “5.” Lincoln then sagely observes that no, the dog still has four legs because – here it comes – calling a dog’s tail a leg doesn’t make it a leg.

The application to the compliance Vs adherence Vs concordance Vs a rose by any other name competition is, I trust, obvious.² Incidentally, in pithy anecdote land, such a comment squelches its target, instantly and irrevocably wins the debate, and redirects the course of world events. Of course, in the real world, the opponent says something like, “What are you talking about? What do dog’s legs and tails have to do with adherence to treatment?” Sometimes, I wish I lived in pithy anecdote land.

The Tangential But Arguably Interesting Issue Of Provenance

The good news is there is an interesting story about the 5-legged dog story. It has nothing to do with patient compliance – which may be off-putting or a blessing.  In either case, read on at your own risk.

In an attempt to track down the provenance of the quote attributed to Lincoln, I found Millard Fillmore’s Bathtub, a site “striving for accuracy in history, economics, geography, education, and a little science” which houses a post about this quotation. An excerpt follows:

I have a source for the quote: Reminiscences of Abraham Lincoln by distinguished men of his time / collected and edited by Allen Thorndike Rice (1853-1889). New York: Harper & Brothers Publishers, 1909. This story is found on page 242. Remarkably, the book is still available in an edition from the University of Michigan Press. More convenient for us, the University of Michigan has the entire text on-line, in the Collected Works of Abraham Lincoln, an on-line source whose whole text is searchable.

Rice’s book is a collection of reminiscences of others, exactly as the title suggests. Among those doing the reminiscing are ex-president and Gen. U. S. Grant, Massachusetts Gov. Benjamin Butler (also a former Member of Congress), Charles A. Dana the editor and former Assistant Secretary of War, and several others. In describing Lincoln and the Emancipation Proclamation, George W. Julian relates the story. Julian was a Free-Soil Party leader and a Member of Congress during Lincoln’s administration. Julian’s story begins on page 241:

Few subjects have been more debated and less understood than the Proclamation of Emancipation. Mr. Lincoln was himself opposed to the measure, and when he very reluctantly issued the preliminary proclamation in September, 1862, he wished it distinctly understood that the deportation of the slaves was, in his mind, inseparably connected with the policy. Like Mr. Clay and other prominent leaders of the old Whig party, he believed in colonization, and that the separation of the two races was necessary to the welfare of both. He was at that time pressing upon the attention of Congress a scheme of colonization in Chiriqui, in Central America, which Senator Pomeroy espoused with great zeal, and in which he had the favor of a majority of the Cabinet, including Secretary Smith, who warmly indorsed the project. Subsequent developments, however, proved that it was simply an organization for land-stealing and plunder, and it was abandoned; but it is by no means certain that if the President had foreseen this fact his preliminary notice to the rebels would have been given. There are strong reasons for saying that he doubted his right to emancipate under the war power, and he doubtless meant what he said when he compared an Executive order to that effect to “the Pope’s Bull against the comet.” In discussing the question, he used to liken the case to that of the boy who, when asked how many legs his calf would have if he called its tail a leg, replied, ” Five,” to which the prompt response was made that calling the tail a leg would not make it a leg.

Update: October 5, 2008
Those taken by the Lincoln-Lyle Lovett link referenced in Footnote #1 may wish to check out an expanded discussion with better graphics (including the new Lovett Penny) at today’s post on my personal Heck Of A Guy blog, Lookalikes: Lincoln and Lyle Lovett

1. Does the image of Lincoln atop this post remind anyone else of Lyle Lovett?
   

   ↩

2. If not, a PDF of the complete answer is available for a nominal fee of $63,200. See, that was a joke about assigning an arbitrary meaning to the name, “nominal fee.”↩

As some readers know, in my pre-AlignMap life, three colleagues and I formed EnrichMap to develop a system for grouping patients according to their behavioral patterns pertinent to compliance. That information would allow customized, group-specific strategies to minimize unnecessary treatment failures caused by noncompliance. That decrease in treatment failures would, in turn, reduce the consequent morbidity and mortality, research confoundments, delays, and financial waste.

Our efforts resulted in the Emap Profile, a model that, based on an individual’s responses to a brief (20-25 items) questionnaire, divides the adult, cognitively-intact population into six segments, each with different implications for patient compliance:

1. Sage and Satisfied
2. Security Seeking
3. Self Starting
4. Uncertain and Concerned
5. Spontaneous and Impulsive
6. Vigilant and Suspicious

The problem was that we were unable to find a practical means of testing the tool.¹ Consequently, we set the project aside. I began the AlignMap web site and blog, in fact, to provide an outlet for my continuing interest in treatment adherence.²

It now appears likely that my partners and I will be able to work with one of the companies involved in clinical trials to determine, in exchange for future considerations for their use of the this technology, if the Emap Profile does what we think it does.

And thus is reincarnation accomplished in the business world.

One manifestation of this corporate revitalization is the EnrichMap.com web site, which just came online. EnrichMap.com offers, naturally, more information about the Emap Profile, including the opportunity for a visitor to determine which of the six groups best describes his or her pattern of responses to healthcare instructions.

I’m posting about EnrichMap not only because I’m proud of that work but also because visitors to this site should know that I have a personal and financial interest in that service.

Information about EnrichMap and the Emap Profile is available at ~ EnrichMap ~

Footnotes

1. “Practical means of testing the tool” translates into “a clinically and statistically valid method for testing our hypothesis that we could afford out of pocket.”↩
2. Yes, if I had known we would be resuscitating EnrichMap, I might have chosen a name for this site other than “AlignMap,” which will inevitably be confused with “EnrichMap.”↩

‘Cognitive Dissonance’ Became a Milestone In 1950s Psychology By Cynthia Crossen Wall Street Journal December 4, 2006

As the title of this article suggests, it is an historical look at Leon Festinger’s development of the concept of cognitive dissonance. I’ve written about it today because (1) it’s interesting on its own merits and (2) it serves as a reminder that the phenomena underlying patient compliance are not unique to healthcare and that theoretical work in non-healthcare fields, including but not limited to cognitive dissonance, may be directly applicable to the problems of nonadherence to treatment.

This excerpt makes the same point:

Why, for example, do people who know cigarettes are bad for their health continue to smoke? This is classic cognitive dissonance: They know one thing and feel another. Mr. Festinger believed this incongruity is as uncomfortable to the human organism as hunger. One way or another, the anxiety must be assuaged. So the smoker builds a bridge — a rationalization — from feeling to fact: If he stopped smoking, he’d gain weight, which would also be unhealthy; some risks are worth taking to have a full life; the risks of smoking have been exaggerated. Indeed, in a 1954 survey asking people if they felt the link between lung cancer and cigarettes had been proven, 86% of heavy smokers thought it wasn’t proven, while only 55% of nonsmokers doubted the connection.

And, the examples are fascinating. For example,

But where Mr. Festinger found the richest raw material for his theory was in a cult that developed in Chicago in 1954. A woman Mr. Festinger called Marion Keech claimed she was receiving messages from another planet, Clarion. The messages predicted that on a given date, a cataclysmic flood would engulf most of the continent. Those who joined Mrs. Keech’s sect would be picked up by flying saucers and evacuated from the planet. … Before the dates of the expected flood, the cult was mostly averse to publicity and had no interest in attracting other believers. On the day before the flood, the group was told that at midnight a man would appear at Mrs. Keech’s house and take them to a flying saucer. But no knock came at her door, and the group struggled to find an explanation for why there would be no flying saucer or flood. At 4:45 a.m., the group said, a message arrived from God saying He had stayed the flood because of their strength. What interested Mr. Festinger was not so much this face-saving explanation as what the cult members did in the following weeks. Rather than shunning public attention as they had before, they began zealously proselytizing. “There were almost no lengths to which these people would not go now to get publicity and to attract potential believers,” Mr. Festinger wrote. “If more converts could be found, then the dissonance between their belief and the knowledge that the prediction hadn’t been correct could be reduced.”

Commentary: Cognitive Dissonance And Noncompliance

Among other insights it offers, cognitive dissonance goes a long way toward explaining why starkly presenting patients with facts, regardless of how valid the data and how elegant the research, is insufficient to improve compliance. In fact, as the example of the doomsday cult excerpted above points out, those individuals whose beliefs are proven inaccurate in the most definite and most public manner are most likely to react by intensifying their commitment to those erroneous beliefs. It further follows that perhaps aggressive, dramatically confrontational approaches to patient education are not only ineffective but counterproductive.