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Beyond Compliance, Adherence, & Concordance – Supporting The Patient’s Implementation Of Optimal Treatment

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Beyond Patient Compliance: Patients Who Lie

June 15th, 2009 · Comments Off

lying-pt

Keep a watch also on the faults of the patients, which often make them lie about the taking of things prescribed.
- Hippocrates1

Launching A Guerrilla Attack On Patient Compliance – The Battle Of Patients With Pants On Fire

The publication of  Lots Of Patients Fib, Sometimes By Accident, a  nicely done article by Karen Ravn in the June 8, 2009 LA Times about patients who  lie to their physicians  provides a circumscribed clinical scenario that  demonstrates  both the problems with the current patient compliance paradigm and the rationale for the kinds of changes necessary to transform it into a useful concept.

An excerpt from the Lots Of Patients Fib, Sometimes By Accident follows:

It’s well-known that patients don’t always do a perfect job of following — or “adhering to” — the treatment plans their doctors lay out for them. A paper published in 2004 in the journal Medical Care analyzed more than 500 studies on that matter and found that, on average, about 75% of patients met the adherence standards researchers had set.

But these figures may overestimate adherence because some patients are probably fudging. “Patients who say they always take their meds may not be,” says Dr. Steven Hahn, professor of clinical medicine at Albert Einstein College and an internist at Jacobi Medical Center in New York City.

“Patients who say they don’t always take them are likely to be missing significant amounts.”

One indication of how much people fib is how things change when they know they’re being watched.

In a 2001 study in the Journal of Hypertension, scientists followed 41 patients who had been unsuccessful in lowering their blood pressure with three prescribed drugs. Patients continued taking the same three drugs during the study, but they now knew they were being monitored electronically: The drugs came in special packages that recorded the date and time whenever they were opened.

After two months of being monitored, about one-third of the patients had lowered their blood pressure to the normal range. Chances were good, the researchers concluded, that those patients had not been taking the drugs properly before.

A number of other studies have found that patients in clinical trials sometimes “dump” their medication — i.e., simply dispose of it — so it will look as if they’ve been using it as prescribed even though they haven’t.

Also, in the above-mentioned 2000 study published in Chest, 236 patients used inhalers to take medication intended to help them breathe. The inhalers were fitted with electronic monitors that could record the date and time whenever patients used them. Not all of the patients knew about the monitoring feature.

During one year of the study, 30 of the 101 patients who did not know they were being monitored — about 30% — dumped at least once. (Dumping was defined as activating the inhaler more than 100 times within a three-hour period.)

Of the 135 patients who did know they were being monitored, only one dumped.

Most of the dumping incidents occurred just before a clinic visit, and researchers concluded that patients dumped in order to give the impression that they had used their inhalers more often than they had.

No experienced clinicians, I suspect, will be surprised by this information. And, I’ve found few non-clinicians, who, on reflection, fail to recognize that misleading a doctor about treatment adherence, whether by omission or commission, is common.

The potential consequences, however, may be less apparent.

I examined the difficulties created by patients misleading their doctors about their compliance with the prescribed treatment in an earlier post, Treatment Adherent Refusal Of Prescribed Medications.  There I pointed out the risk that the patient would undergo unnecessarily aggressive treatment:

Clinicians cannot efficaciously deal with treatment failure caused by noncompliance if they do not know that the patient did not follow the treatment plan. At best, physicians will be less efficient in providing appropriate care; at worst, they may modify the treatment with disastrous results.

Moreover, the dangers to the patient’s health and the financial cost to the patient and society can increase exponentially. Consider this example from Noncompliance Costs of a nonadherent patient who hides the noncompliance from his doctor:

A Case Of Routine & Tragic Patient Noncompliance

A patient with an respiratory infection does not complete the full course of the antibiotic prescribed by his physician. When symptoms persist, the patient returns to his doctor but fails to report the noncompliance. The physician consequently believes that the original medication was somehow inadequate (e.g., the pathogen was resistant to the medication or not covered within the therapeutic range of the medication) and prescribes a different agent, one that is more costly and more prone to side-effects.

Already in this scenario, noncompliance has resulted in

  • At least one unnecessary clinic visit
  • Two medications in a situation in which one might have sufficed
  • A potentially erroneous shift in ongoing treatment
  • An increased risk of adverse medication effects, both because the second drug causes more side-effects than the first and because the patient is exposed to two medications instead of one
  • A deviation, based on misinformation, from the initial treatment plan which, by design, should provide the optimal combination of safety, affordability, and effectiveness for that patient. At best, the new treatment plan will be similar to but somehow less advantageous than the original therapy. At worst, the noncompliance-caused treatment failure will cause the clinician to mistakenly alter the diagnosis and treatment such that the actual problem is not addressed.

This example is, admittedly, oversimplified. Some disorders improve despite noncompliance with treatment. Some clinicians might have suspected noncompliance when the patient did not improve. Some patients do confess their failure to follow the treatment plan. Nonetheless, a plethora of evidence demonstrates that noncompliance clearly increases the risk of treatment failure, that clinicians rarely recognize or even suspect noncompliance, and that patients even more rarely reveal nonadherence to treatment. This example is, in fact, statistically condensed but conceptually accurate, and countless analogous cases occur every day throughout the healthcare system. …2

Because of the complexity and interdependent nature of the contemporary healthcare system, the impact of patient noncompliance is rarely limited to wasting one medical treatment that would have been successful if implemented. Instead, any treatment failure caused by noncompliance is subject to an array of multipliers, some obvious and some invisible, that can easily increase the potential fiscal, physiological, and social cost exponentially and connections, both direct and indirect, that distribute a similar range of losses to others. Moreover, the extraordinarily high value western culture places on both the individual and health heightens the stakes and further drives the process.

Not only is this a common problem and one with serious consequences but it is also one nurtured by the contemporary patient compliance model.

Patient Compliance Is A Self Defeating  Strategy

In Treatment Adherent Refusal Of Prescribed Medications, I also pointed out that the conflict between patient and clinician that is part and parcel of our perspective on patient compliance motivates the patient to lie to the doctor:

The currently prevalent models of noncompliance management have a final common pathway: their objective, their only measure of success, is the patient following the medication regimen as prescribed – whether this goal is attained by coercion, persuasion, incentives, moral appeals to responsibility or concern for ones family, patient education, or other methods. Even so-called “patient empowerment” can be accurately translated in this context as “the patient is empowered to choose to take the medication as prescribed.” Consequently, patients who do not take their medications as prescribed are powerfully but covertly encouraged to actively or passively mislead clinicians about the noncompliance, perpetuating this vicious cycle.

This realization led to what I then modestly called …

The Incredibly Revolutionary Idea

1. We quit pretending that noncompliance will disappear if patients are properly educated, persuaded, empowered, informed, motivated, coerced, bribed, threatened, influenced, or reminded. We acknowledge the obvious – that except in a few cases,3 the patient makes the final choice about following a prescribed treatment.

2. Rather than continue the unrequited efforts to eradicate noncompliance, we try, as a first step in breaking the vicious cycle, fixing that part of the healthcare system that multiplies the damage caused by noncompliance: the miscommunication between clinician and patient about noncompliance.

I went on to suggest how the reader might address this issue directly with his or her clinician, but precise tactics are, in this case, less important than the big picture, i.e., the afore mentioned Incredibly Revolutionary Idea.

Bastille500

Storming The Bastille

The New Order Of Things – Replacing Patient Compliance

While only one aspect of the healthcare process, the problem of patients lying about adherence does spotlight the need for and the type of change in patient compliance I am promoting.

Continuing to emphasize the requirement of adhering to a prescribed treatment regimen also continues the conflict between patient and clinician, which, in turn, encourages the patient to lie to the doctor about following treatment. Because every doctor has had the experience of patients lying to him or her, the mistrust has become pervasive. Wary doctors may well mistrust all patients since discerning who is and isn’t telling the truth is difficult and often impossible.   Consequently the entire system has become corrupted.

My contentions are (1) the goal is not good compliance by a specific patient but instead optimal treatment for each patient and (2) optimal treatment is most efficaciously pursued by aligning the doctor, the patient, and other stakeholders to maximize mutual trust, a strategy which takes priority over the percentage of prescribed pills taken by the patient.

To dismantle the patient compliance apparatus that has hindered improvements in treatment outcomes, a systemic shift in perspective is necessary.

As an integral element of that shift, the doctor must convincingly transmit to the patient that valid and reliable communication between them supersedes a compliance scorecard.

Or, I suppose we can invest in electronic compliance monitoring devices, lie detectors, and a spy network.

lie-detector-1-main_Full

One option for managing patients who may be lying

By the way, we might want to consider changing the name from “lie detector” to something like “trust enhancement processor.”

__________
  1. I know – I’m tired of seeing this quotation too. It just fit so well, I felt compelled to use it.
  2. This scene is extended beyond this point in the original example at Noncompliance Costs, . I recommend reading it in its entirety to gain a perspective on how  impressively simple it is to conjure up plausible scenarios in which initial noncompliance which is compounded by lying  about it leads to severe incapacity or death and, by extrapolation, how likely it is that this sort of thing happens with some frequency.
  3. E.g., cases involving children or adult patients incompetent to handle their own healthcare and cases in which forced compliance with treatment is legally sanctioned and is pragmatically feasible

Tags: Basics · Transforming Compliance

From Patient Compliance To Side-effectology

June 12th, 2009 · Comments Off

If the same principles currently prevalent in the field of patient compliance were applied to the study and management of side-effects, …

intercosmicJrnl

Intercosmic Journal Of Treatment Side-Effectology

Searching for the cause  of treatment side-effects & its cure

Articles

  • 381st study shows same  side-effect rate  of  1 to 98%  – Researchers perplexed, obtain grant for further studies  tabulating subjects in reverse alphabetical order
  • Side-effects decreased  when patient is engaged as member of the treatment  team (the one in charge of side-effects)
  • Terminology Debate Continues -  Resolved: “Side-effects” is too medical and must be replaced by “Unintended Results”
  • Calculating acceptable levels of side-effectiveness
  • Patients with costly adverse  reactions  to treatment from  state-funded clinics face dismissal under new legislation; Bill’s sponsor points out, “We’re paying for treatment, not side-effects.”
  • blindfoldxPatients  equipped with new  side-effect reduction device report  disappearance of  rashes caused by medication

  • Patient shown operating  Visual
    Side-effect Detection Modulator

    An AlignMap.com Publication – Allan Showalter, MD, Editor

    Tags: Basics

    Patient Compliance – So Wrong For So Long

    June 9th, 2009 · Comments Off

    fishbarrel500

    I’ve published a second post, Patient Compliance – So Wrong For So Long, at the eyeforpharma.com site.

    For ongoing AlignMap readers, this will be a new perspective on an old theme – the failure of the concept of patient compliance to provide reliable or valid information about a patient’s response to treatment recommendations.

    Specifically, I compare the meager accomplishments in treatment adherence to the civilization-changing benefits produced in the field of epidemiology.

    I also offer examples in which minor situational variations may – or may not – change ones assessment whether a given patient is compliant or noncompliant. The implicit question, of course, is how useful can the concept of compliance itself be if the significance of a patient being identified as compliant or noncompliant is nebulous.

    About That Fish, The Barrel, And The Smoking Guns

    Yeah, I know it seems like overkill, and it is, I admit,  a tad too easy to be enjoyable as a sport, but, after all, the current ideas about patient compliance have so far  been able to dodge bullets for decades and still survive.

    More to the point,  this elaboration of the problems with patient compliance is necessary as explanation of and motivation for the changes essential for creating a functional alternative to the current thinking.

    In the meantime, take a look at Patient Compliance – So Wrong For So Long if for no other reason than garnering inspiration from epidemiology’s successes and imagine what could be accomplished if we could make similar advances in patient compliance.

    Tags: Basics

    The Tragedy Of Patient Compliance

    May 17th, 2009 · Comments Off

    I’ve been invited to post on the eyeforpharma.com site. In hopes of extending my audience, I’m giving it a shot.

    This is a trial and error process. We’ll see how it works out.

    The initial post can be viewed at The Tragedy Of Patient Compliance.1

    __________
    1. Because of the differences in formatting and use of graphics at eyeforpharma.com and AlignMap, I’m also considering reposting similar material to that I enter at eyeforpharma.com at AlignMap at the same time or a short time later.

    Tags: Basics · Blog

    Emperor’s New Clothes Named Official Metaphor In Patient Compliance Is A Myth Campaign

    May 11th, 2009 · 1 Comment

    emperorcloth

    The Emperor Views His New Clothes

    Unicorns, Atlantis, Easter Bunny, Hooker With Heart Of Gold, World Champion Chicago Cubs In Runners-Up Spots

    To illuminate the flaws  inherent in  the  contemporary notion of patient compliance, I have, in previous posts, invoked such cultural references as the Ptolemaic cosmological model Rumpelstiltskin, Johnny Cash’s classic  “A Boy Named Sue,” The War of the Worlds, Lincoln’s riddle about how many legs a dog would have if one called the dog’s tail a leg,1 and the artist formerly known as “the artist formerly known as Prince.”

    But, it is the Hans Christian Andersen fairy tale, The Emperor’s New Clothes,2 that provides  the most rewarding comparison to  and the clearest understanding of the problems with the concept of adherence to treatment and the need for a comprehensive reorientation of our perspective on this issue rather than a refinement of nuances.

    e-new-clothes

    The Emperor’s New Clothes And Patient Compliance

    The  congruity between the Emperor’s New Clothes fairy tale and the Myth of Patient Compliance ain’t subtle – or pretty:3

    The Emperor’s New Clothes: No one can see the non-existent apparel ostensibly worn by the King, yet the King and everyone else, except one child, behave as though they not only see but admire  those clothes.

    The Myth Of Patient Compliance: No one can see non-existent evidence that the current ideas about treatment adherence are conceptually or pragmatically valid, yet the healthcare community behaves  as though these theories are not only well supported but have also proved to be useful means of  improving the proportion of treatments effectively completed as prescribed.4

    In the fairy tale, the King parades in his “new clothes” that exist  only in the fantasy woven by the corrupt tailors because he has too much invested in his self-image to admit he sees nothing (which would also be confessing, as explained by those same crooked clothiers, that he is too stupid to see the outfit). The crowd of  subjects cheering their Monarch only ostensibly dressed in his finest attire may have shared the Emperor’s narcissism, been intimidated by the Royal Guard, been influenced by the others in the crowd claiming to see the wonderful clothes, or simply succumbed to  the lure of the path of least resistance.

    Similarly, few authoritative individuals, healthcare organizations, professional societies, institutions, commercial firms, pharmaceutical companies, or third party payers  identify themselves as passionate disciples of the dominant point of view re treatment adherence.  In fact, the clinician  willing to  unequivocally endorse the utility of the current notion of adherence to treatment may be no more common than the afore mentioned unicorn. Yet, the topic continues to generate ever increasing numbers  workshops, conferences, electronic gizmos, web sites, advertising programs, claims of effectiveness, declarations, sub-theories, and, especially, research papers. The capacity of those in the field to run the same compliance studies and enhancement programs to obtain the same unsubstantial results for the past 30+ years in the face of minuscule, if any, progress is, as the kids used to say, awesome, dude.

    At this point a hypothetical reader5 may be (conveniently) asking, “Why haven’t we tried other approaches?” Well, as far as I can determine, the healthcare industry persists in treating patient compliance as though it is a pragmatically effective idea (or, at worst, a concept that requires only that one final study to provide definitive proof) because of *1) confusion between patient compliance as a statistic (e.g., the percentage of medication doses taken as prescribed) and patient compliance as a conceptual perspective and (2) simple intellectual inertia.

    We in the healthcare community are a persistent fort, albeit perhaps not quite as bright as our mothers might have hoped.

    A Tentative Response

    How about this for a rule of thumb:

    If, after 30 years of extensive and intensive effort based on a given theory, the clinical, scientific, and commercial sectors of  healthcare cannot develop effective solutions to a problem that massively reduces the effectiveness of medical treatment, then  (1) trying the same studies for another 30 years or refining the jargon isn’t likely to be  the optimal course of action, (2) maybe – just maybe -  it’s  the theory rather than the research that is faulty, and (3) approaching the issue from a new perspective could be the way to go.

    Yeah, it’s a wacky idea, but it’s so crazy so crazy it might just work.

    The Role Of AlignMap

    As for me, I’m auditioning for the role of the  conveniently non-self-censoring little brat boy who points out the obvious.  It smacks a bit of typecasting, but still, …

    end3

    Upcoming AlignMap Series:

    Transforming Adherence Into A Useful Concept
    Things To Do Until The Manifesto Is Finished

    __________
    1. Solution: The dog still has four legs because – here it comes – calling a dog’s tail a leg doesn’t make it a leg.
    2. Wikipedia provides a serviceable  synopsis of the story line:

      An emperor of a prosperous city who cares more about clothes than military pursuits or entertainment hires two swindlers who promise him the finest suit of clothes from the most beautiful cloth. This cloth, they tell him, is invisible to anyone who was either stupid or unfit for his position. The Emperor cannot see the (non-existent) cloth, but pretends that he can for fear of appearing stupid; his ministers do the same. When the swindlers report that the suit is finished, they dress him in mime. The Emperor then goes on a procession through the capital showing off his new “clothes”. During the course of the procession, a small child cries out, “But he has nothing on!” The crowd realizes the child is telling the truth. The Emperor, however, holds his head high and continues the procession.

    3. The fairy tale and the issues involved in adherence to treatment do not fit perfectly in one area.  Unlike the con men hired as the Emperor’s tailors, the clinician-researchers who formulated our current vocabulary and models of patient compliance were attempting to discover underlying truths rather than pull off a scam  for their personal gain.  On the other hand, it does appear  likely  that some  self-serving claims about certain compliance enhancing technologies have employed especially  creative interpretations of  already ambiguous  terminology.
    4. Evidence for and an elaboration of these contentions can be found at The State of the Art.
    5. Or, alternatively, a unicorn

    Tags: Basics

    Seeing More Of Giles Brindley, Extreme Show & Tell

    April 27th, 2009 · Comments Off

    Las Vegas, 1983

    About Giles Brindley – Extreme Show & Tell

    Professor Giles Brindley and his amazing presentation were the topics of an article, originally published at this site November 6, 2006. Today’s offering is a significantly revised version with additional information not previously available to me and, as far as I can determine, not available elsewhere in print or on the Internet. The update is found at Giles Brindley – Extreme Show & Tell.

    The question now becomes, who is Giles Brindley and what could be so “amazing” about his presentation to warrant clicking on one more link to access that post?

    Anticipating that AlignMap readers are of the discriminating ilk that would pose such a query, I have prepared a response, in the form of …

    5 Reasons To Read Giles Brindley – Extreme Show & Tell

    1. The opening lines of the post are not without a certain intrigue:

    Answer:
    Displaying One’s Erection As Part Of A Lecture At A Scientific Meeting

    Question:
    What Happens In Vegas That Doesn’t Stay In Vegas?

    2. The central event, which takes place in Las Vegas during a medical society annual meeting, features (1) a farcical episode in which physicians and their spouses, dressed in formal attire, are beset with shock and awe by the sight of an exposed penis, (2) an important advance in basic physiology and the treatment of erectile dysfunction, and (3) a contribution to a major cultural shift.

    3. A “logical bassoon” plays a role in the discussion (and not as an euphemism) , as do pole-vaulting (also not an euphemism), orienteering, visual neuroprosthetics (in the 1960s), ironically rare photos, and – yep, you guessed it – Leonard Cohen.

    4. A major thrust of this post (the one with the exposed penis, Las Vegas setting, pole-vaulting, etc.) is to counterbalance the sensationalism of other reports of this episode.

    5. Dr Klotz, the author of the definitive first hand account of Professor Brindley’s presentation, has generously written a laudatory afterword recommending the piece that I immodestly reproduce here:

    In April 1983, I was a senior resident in the last few months of my residency training, and heavily focused on preparing for my upcoming qualifying exams. To top up my knowledge, I vowed to attend every session at the annual meeting of the American Urological Association that I could. That was the only reason that I attended the evening session of the Urodynamics Society, since urodynamics was not my primary interest. At that lecture, I was witness to a unique and historic experience. The lecture, at which Giles Brindley announced to the world his historic self-experiments in penile injection therapy, and demonstrated its effectiveness in a highly convincing way, has remained very fresh in my mind. The lecture rapidly took on a mythic quality in urologic circles. There were 2 reasons for this: a) Dr. Brindley’s courage and idiosyncracy in demonstrating the effects of penile injection on himself in a public forum, and b) the importance of his discovery. Penile injection therapy revolutionized the management of erectile dysfunction, and is widely used around the world.

    Allan Showalter has written an extraordinary description of this extraordinary and unique individual. Dr. Brindley is one of a kind and he deserves to be remembered. Dr. Showalter has made a major contribution by portraying his multi-dimensional qualities. His article is wonderful.

    Laurence Klotz
    President, Canadian Urological Association

    end3

    Again, today’s post can be found at

    Giles Brindley – Extreme Show & Tell

    Tags: History

    Capshell Pill Dispenser Flashy, Fashionable

    February 19th, 2009 · Comments Off

    capshell

    capshell41

    Same Old Functions But It Does Look Slick

    The Capshell, featured at the  Yanko Design Blog, operates much like the other automated pill dispensers:

    The device records when medication is taken, and shows the user the correct intervals programmed by the pharmacist. If not activated at the correct time, the device sends an alert to the users phone via text, or “SMS.” Once in the grip of the user, it opens easily by turning round, revealing the opening corresponding with the time of day. This way of opening is helpful to the elderly, as it eliminates hard-to-open caps. Each days replacement tube is labeled clearly with text and with Braille numbering.

    The packaging is, however, unique. The steel and gray containers seem a 1990s update of the venerable pneumatic tubes, a design dating to the early 1800s.

    1d_pneumatic_tube

    Pneumatic Tube used in some US post offices

    Even the opening latch mechanism seems familiar.

    capshell21

    Capshell

    pneutaube

    I am keeping the Capshell in mind. It should look great in Mom’s Manhattan pied-a-tier.

    pied-a-tier

    Tags: Enhancements

    Dear Diary – Patient Compliance & Medication Diaries

    January 19th, 2009 · 1 Comment

    meddiafry2

    The Presentation

    Compliance With Capecitabine Therapy Very High Among Swiss Cancer Patients: Presented at ASCO-GI 1  summarizes a presentation of study results2 made on January 17 at the American Society of Clinical Oncology’s 6th Gastrointestinal Cancers Symposium (ASCO-GI), cosponsored by the American Gastrointestinal Association Foundation, the American Society for Radiation Oncology, and the Society of Surgical Oncology.

    The findings are encouraging – but there is a caveat. Pertinent excerpts follow:

    Patients who were prescribed oral capecitabine for treatment of breast or gastrointestinal (GI) cancer appear to be highly compliant in taking the oral medication, according to a study conducted in Switzerland.

    … For the study, patients receiving capecitabine either as monotherapy or in combination with other chemotherapeutic agents recorded their daily capecitabine intake and any adverse effects on a diary. After completion of therapy for a maximum of 8 cycles, the data were transferred to a questionnaire in which the reasons for discontinuation were also collected.

    …  Of the overall cohort, 91% took capecitabine as prescribed for the entire course of treatment. Reasons for interrupting therapy included forgetting to take treatment (56%), adverse effects (25%), and misunderstanding instructions (19%).

    … Dr. Winterhalder said that the 16 patients who did make compliance errors included 9 instances in which the patients forgot to take the medicine. He said that despite the impressive compliance figures seen in the study, there are ways to improve the compliance further.

    “Patient management systems such as patient diaries may further improve compliance and adherence with treatment,” he said during his poster presentation. “Compliance may be further improved by educating patients about how to recognise and manage treatment toxicities.”

    Commentary Or What’s Wrong With This Premise?

    Maybe I’m missing something, but I think this study declares that using a medication diary enhances compliance – based on compliance rates measured by the patients’ entries in a medication diary.

    And, as far as I can determine, there is no control group for comparison.

    Either the summary of this study is incomplete or the quality of the evidence must be considered suspect.

    __________
    1. Compliance With Capecitabine Therapy Very High Among Swiss Cancer Patients: Presented at ASCO-GI By Ed Susman. Doctor’s Guide. January 19, 2009
    2. Presentation title: Compliance With Capecitabine: Findings From a Prospective Cohort Analysis. Abstract 420

    Tags: Research

    Patient Compliance Gets Personal

    January 18th, 2009 · Comments Off

    Coming across two blogs relating especially poignant and insightful  personal experiences with medication compliance defeated my plan to abstain from  posting while I develop a new project (more about that at a later date).

    My repeated criticisms of contentions made about treatment adherence without evidence notwithstanding, I’ve long held the belief, based on my interpretation of my own clinical experience (at best, a particularly shaky n=1),  that (1) healthcare practitioners who have an empathic understanding of their patients’ struggles with compliance can better assist those individuals in that effort than the equally competent but unempathic colleagues and (2) one way of gaining and deepening such empathy is through reading personal account by patients – like these.1

    chezperky

    Patient Compliance Overlaps Parent-Child Compliance

    Bending, not Breaking at  Chez Perky describes a special subcategory of  medication adherence, a child’s resistance to medication. This excerpt evokes the sense of the mother’s dilemma  and indicates how much energy, thought, and time she has invested before calling the pediatrician for help:

    Getting him to take his medication has always been a struggle, as you may remember. That’s why the Daytrana Patch was such a lifesaver. But it had too many downsides for his profile to be the optimal answer. It didn’t work as well for him as the Focalin does. But getting him to take a medicine orally is next to impossible. We have two good weeks, and then two weeks of hell, then two good weeks, then two weeks of pure hell, and so on. We are currently in hell, and I’m not sure it’s only going to last two weeks.

    His latest trick is that he won’t open his mouth to take the medicine, but even once he does, he gets the medicine (which was mixed into mango sorbet – don’t ask… he has a discriminating palate) in his mouth and then won’t swallow it. He stands there and cries and refuses to swallow for what seems like forever, but is really somewhere between 5 and 15 minutes, and then either spits it out or forces himself to throw up (no, I’m not exaggerating). Occasionally he’ll swallow it under threat of not getting potato chips in his lunchbox, but that threat doesn’t hold a lot of weight anymore.

    overcomingszhiz

    From Mandated To Self-Motivated Treatment Adherence

    Two posts, Why I Take My Medicine and  Recovery: What Helped Me to Recover from Schizophrenia, at Overcoming Schizophrenia focus on compliance. The latter examines the importance of  legally mandated treatment (often known as “Assisted Outpatient Treatment” or “outpatient commitment”) in the writer’s case while the first entry describes the catastrophic consequences of the writer’s past nonadherence and the rationale the writer has found most useful in maintaining compliance. This excerpt summarizes that reasoning:

    Medication compliance is a life-long routine because there is no cure schizophrenia, however, there is treatment. If I stop taking the medication I have an increased risk for a relapse, another psychotic break, and symptoms will return. My chances of a relapse increase each day I do not take my medication; so far I have accidentally skipped two days total over a span of one year on Abilify. I take pride in the responsibility I carry out every day of my life.

    Each of these posts is worthwhile reading for clinicians who want to understand and help their patients in the realm of medication compliance and for patients and the family and friends of patients involved in those struggles.

    __________
    1. I know – my concept is not scientifically supported; there are few studies that address this point and the results of those are open to varying interpretations. I do have two defenses: (1) I point out that I have no proof of this hypothesis so at least readers are not being misled and (2) My blog, my rules.

    Tags: Enforced Treatment · Experiential

    Edible Chips May Be New Standard For Medication Adherence Monitoring

    December 27th, 2008 · Comments Off

    verichip

    From Wired’s list of 10  Top Technology Breakthroughs of 2008

    9. Edible Chips

    Grandma’s pillbox with the days of the week neatly marked is set to go high tech. Tiny edible chips will replace the organizer, tracking when patients take their pills (or don’t) and monitoring the effects of the drugs they’re taking. Proteus, a Redwood City, California, company, has created tiny chips out of silicon grains that, once swallowed, activate in the stomach. The chips send a signal to an external patch that monitors vital parameters such as heart rate, temperature, state of wakefulness or body angle.

    The data is then sent to an online repository or a cellphone for the physician and the patient to track. Proteus says its chips can keep score of how patients are responding to the medication. That may be just the beginning, as the chips could improve drug delivery and even insert other kinds of health monitors inside the body. Now doctors may have a better answer to a common patient complaint — they will know exactly how it feels.

    Outlook: If proven in clinical trials, edible chips could let physicians look into a patient’s system in a way that could change how medicine is prescribed and how we take the drugs.

    Commentary

    While I am less confident than the denizens of Wired that the edible chips will automatically mark a revolution in health care, I do believe they could be a key tool in researching and confirming patient compliance.

    At the least, they should be the new gold standard for tracking medication adherence.

    Credit Due Department: Image from Businessweek

    Tags: Research

    To Comply Or Not To Comply, That Is The Question

    December 27th, 2008 · Comments Off

    bipolar4

    Compliance And Bipolar Disorder

    Trusting Your Diagnosis of Bipolar,  today’s post on Bipolar By Chance, a blog authored by Donald Kern, who addresses bipolar disorder from the point of view of  both a patient and a psychotherapist,  focuses on treatment compliance.

    While the “To comply or not to comply” riff on Hamlet’s soliloquy is clever enough that I co-opted it for the  title of this entry, the key point of the post, by my lights, is the following:

    In my own [Mr. Kern's] case it took 12 years before I firmly accepted that the adherence to taking medication on a daily basis and for the rest of my life was a necessity; no more questioning, but rather acceptance.

    I’m struck by the similarity between this declaration and the conclusions reached by other patients who write about their disorder.

    It does seem likely to me that, at least for some patients, surrendering their ambivalence about the recommended therapy is an essential step in the implementation of an optimal treatment plan.

    Not only is that an interesting theoretical possibility, but it also highlights an instance of cultural politics interfering with patient compliance management.

    First,  for the purposes of this thought experiment, we stipulate that a subgroup of patients is likely to successfully implement an effective treatment if and only if they buy into the diagnosis and suggested treatment wholeheartedly, to the point of dismissing any negative thoughts about therapy.  Again, this is an altogether reasonable, albeit unproven, idea.

    The problem lies in the next step. In today’s social context, any  clinician – but especially any physician – who advocates, regardless of how modestly and how apologetically, that the patient believe in the treatment plan without reservation, can expect accusations of paternalism and condescension at best and, all too frequently, charges of unethical subjugation of the patient.

    The only other point I want to make about this post is that I am less certain than Mr. Kern seems to be  that buying into ones diagnosis is sufficient to result  in adherence in most patients.

    That, however, is a small point and does not deter me from suggesting that viewers will garner insight and information from reading  Mr. Kern’s entire post, which is available at Trusting Your Diagnosis of Bipolar.


    Tags: Theory

    Naming Rumpelstiltskin And Treatment Adherence

    December 23rd, 2008 · Comments Off

    rumpelstiltskin-crane1886

    I came across the Rumpelstiltskin Phenomenon, a concept that is pertinent to my contention that the focus on renaming the phenomenon now most commonly known as patient compliance or treatment adherence is unlikely to prove an advantage, even if the renaming is accomplished.

    The Rumpelstiltskin Phenomenon

    From: A Dictionary of Psychology  (2001).  Author: Andrew M. Colman.

    Rumpelstiltskin Phenomenon The tendency for the naming of something to create the impression of imparting an understanding of it. It applies, for example, to the naming of mental disorders: a person who tells implausible lies may be said to be suffering from pseudologia fantastica, but that term is nothing more than a name for implausible lying, and any impression that it imparts an understanding of the phenomenon is a cognitive illusion. [Named after Rumpelstiltskin in a famous fairly tale, called Rumpelstilzchen in the German version collected by the brothers Grimm, a strange dwarf who exerts a baleful influence over a miller's daughter until she eventually gains power over him by learning his name]

    I confess to feeling gratified to discover that someone has articulated the ambiguous  notion I had  developed in thinking about the renaming of patient compliance.  It is, of course, a tad ironic that I’m happy about finding  the phenomenon I grasped instinctively – that naming something doesn’t necessarily improve ones understanding of it -  has a name

    Tags: Basics