Compliant is one of those words that makes my skin crawl. It’s the word that our doctors use to describe good patients who take their prescribed medications exactly as ordered. The Teenage Cancer Trust’s Simon Davies in the U.K. once described the C-word (and its ever-so-slightly less patronizing alternative adherent) as words that “sound like they have punishment at the end of them.”
But for most physicians, both words mean the same thing: a serious health care issue. That’s because when patients refuse or stop taking the medicine their doctors have prescribed to help manage a serious medical condition, the consequences are often devastating. From organ transplant recipients to those living with chronic diagnoses like diabetes, heart disease, epilepsy, HIV or Hepatitis C, those consequences can be swift and sometimes even fatal.
Apparently, 20-30% of all drug prescriptions written for patients are never even filled at the pharmacy in the first place. That’s called primary non-compliance.
When physicians in a large medical clinic in Singapore noticed prescriptions they had just written tossed into the public litter bin, or crumpled up and discarded on the sidewalk just outside their clinic door, for example, they became curious. Their subsequent study on primary non-compliance found that patients who were both under age 30 and being treated for an acute complaint were far more likely not to get their prescriptions filled.(1)
The World Health Organization (WHO) estimates that only 50% of people who do get their prescriptions filled at the pharmacy actually complete taking the full course of medication therapy just as prescribed. Doctors call this secondary non-compliance.
Here is the WHO list of top disease categories known for secondary non-compliance (those who start taking their meds but then stop abruptly, or don’t take the meds in the precise way they were prescribed – such as daily pills taken every other day, or taking half a tablet instead of one):
- diabetes non-compliance (up to 98% in North America) is the principal cause of complications related to diabetes including nerve damage and kidney failure
- hypertension (high blood pressure) non-compliance (93% in North America, 70% in the U.K.) is the main cause of uncontrolled hypertension-associated heart attack and stroke
- asthma non-compliance(28-70% worldwide) increases the risk of severe asthma attacks requiring hospitalization
Stats like these drive health care professionals crazy. Why don’t these patients take their meds? Some commonly held theories include:
- cost (see reader comments below on Prescription Assistance Programs)
- distressing side effects
- the “burden of treatment“
- the challenge of managing multiple prescriptions
- cultural issues
- uncertainty about the actual need for the medicine
Research specifically looking at the impact of stress/distress on hospital re-admissions and adherence to discharge instructions (including medication and things like exercise or smoking cessation) has also found emotional states to be a meaningful factor.
I’m not a physician, but even I can tell you that people who feel bad about declining health are not great at taking every pill their doctors order. Other emotional factors identified have been confidence (or lack thereof), self-acceptance, optimism, happiness, self-reliance, trust, resistance to change, resistance to authority and motivation to improve.
An emotional state that’s rarely if ever acknowledged is simply the desire to no longer be a patient. See also: “To just be a person, and not a patient anymore”
Studies that have been done on drug compliance consistently show that there are also certain characteristics common to those who don’t follow doctors’ orders.
In one example, a Boston University study looked at why patients with high blood pressure stop taking the medications their doctors have prescribed.(2) Researchers found that patients who were younger and less active in their treatment decisions tended to be less adherent than their older, more involved peers.
Interestingly, the same study also found that these kinds of patients, when combined with health care professionals who were older, specialists, and physicians (compared with non-physician prescribers like nurse-practitioners) tended to be even less likely to comply with doctor’s orders.
I suspect that those with high blood pressure may share another characteristic, however. If you are diagnosed with high blood pressure, and you take your hypertension meds faithfully every day, you will feel fine. And if you stop taking your meds, you will feel fine. Unlike acute or chronic pain conditions, hypertension – the so-called “silent killer” because it has few if any troubling symptoms while it’s wreaking havoc on your arteries – does not remind you (as pain tends to do) that you forgot to take your pills today.
Another theory to explain non-adherence in taking prescription meds maintains that for many acute complaints (like upper respiratory infections, for example) the illness is in fact self-limiting – so it goes away whether or not you’ve filled the prescription. The rather obvious conclusion of the doctors who undertook this study:
“For these patients, a more satisfactory consult may result if we ask if they wish to receive medication rather than assuming that they do.”
We know that several barriers have generally stood in the way of improving patients’ willingness to take their prescription meds. For starters, “expert” evidence relating adherence to clinical outcomes has often been inconclusive.
While many studies have identified a cause-and-effect link between not taking prescription meds and poor health outcomes, the validity of some of these studies has been questioned because the link between adherence and outcomes is thought to be muddied by a number of influences. For example, studies may:
1. be subject to publication bias— the tendency of authors to submit, and journals to publish, only studies with findings that suggest improvements from therapy.
2. focus on groups of patients for whom the drug or drug class is approved for marketing (people who generally show the greatest positive effect from the drug) and exclude patient groups for whom the drug might be ineffective or even harmful.
As a result, the health care profession has tended to view medication adherence as an intuitively important quality goal, but one with uncertain effects on total outcomes.
Take antidepressant drugs as an example of this development. A 10-year Dutch study found that 76% of depressed patients who did not take any antidepressant drugs recovered and never relapsed. Another five-year study of 9,500 Canadian patients in Alberta concluded that the drug-taking group were depressed on average for 19 weeks, but those who did not take antidepressants were depressed for only 11 weeks. And the World Health Organization has reported that non-medicated patients with depression enjoyed better overall health than those who took antidepressant drugs.
Despite years of research on the puzzling problem of non-adherence, there is apparently no magic bullet that will convince patients to take their medicine “as directed”. I don’t know what the answer is.
The usual bright ideas – for example, electronic reminders, phone apps, flashing pillboxes, or easier-to-open packaging – tend to improve adherence only in the short term, largely because a one-size-fits-all approach fails to address the underlying causes of the way patients behave.
Of course, many patients living with a chronic illness do manage to take their daily whack of pills, often for years on end. And ironically, that in itself can ultimately become a barrier to adherence. Personally, I hate taking my pills.
Let me repeat that:
“I hate taking my pills!“
Every day, day after day, they remind me of what we heart patients call the New Normal. Only those who are expected to take a fistful of pharmaceuticals each day for the rest of their natural lives can appreciate the psychologically exhausting effect of doing so. Add to this the reality of living with this condition and related symptoms, the need to keep track of ongoing medical appointments and treatments, and the full-time job of maintaining that healthy new lifestyle from now on. Only a keen desire to not die of a second heart attack (which, by the way, I have learned that my fistful of cardiac meds does not guarantee me) keeps my dedication to my daily meds routine intact and hopeful. See also: The New Country Called Heart Disease.
Meanwhile, we try to develop resourceful routines – such as putting our morning pills beside the coffee maker and our evening pills on the night stand. We store our pills in blister packs or helpfully colour-coded Days Of The Week segmented pill storage containers. We put post-it notes on our bathroom mirror and buy phone apps or high-tech pill boxes that sound reminder alarms.
One of the threats to that nice little routine is what happens if the routine breaks down.
When a brutal cold recently knocked me flat for two miserable weeks, for example, I didn’t care about anything much except trying to breathe. I couldn’t face showering or reading the mail or even running a comb through my stringy hair for days on end. I was truly amazed to discover once I started feeling a bit better that several of my daily pill box segments had not been touched during the worst of my illness. How did that happen? Easy! That’s situational non-adherence for you. See also: Confessions of a non-compliant patient
Consider the important work being done by Mayo Clinic’s Dr. Victor Montori and his colleagues on the concept called Minimally Disruptive Medicine. This approach focuses on the “burden of illness” carried by patients living with chronic progressive disease. As Dr. Montori explains:
“One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives.
“This concept of burden of treatment relates to the distress (including suffering, interruption, inconvenience) caused by treatment-associated demands for time, attention, and work. We know very little about it, but our international team is working toward clarity in this area.”
Far more problematic for our doctors is the exact opposite of this type of occasional ooops-I-forgot rationale: what’s been identified as mindful non-adherence.
This tool was developed back in 1999 at the University of Illinois to measure patient involvement in their health care decision-making. Initial studies focused on patients in the HIV-AIDS community (in organizations like ACT UP) and health care communication patterns among patients who described themselves as activists.
The PSAS includes three dimensions: illness education, assertiveness, and that “potential for mindful non-adherence.”
This third category is defined as “a tendency to reject treatments” or “a willingness to be non-adherent when treatments fail to meet the patient’s expectations.” Statements on the PSAS tool assess this particular potential in a patient, including:
#10: “Sometimes I think I have a better grasp of what I need than my doctor does.”
#12: “I don’t always do what my physician or health care worker has asked me to do.”
Call me crazy, but my guess is that virtually all patients I know who are active in rare or chronic disease communities online would respond YES and YES to those survey statements.
Last summer, I learned of a study reported by a team of researchers from RAND, UCLA, and UC Davis about the contrast between what physicians believe and what they actually do when it comes to seeing if their patients are staying on track with their medications.(3) Here’s what they found:
- Although physicians uniformly felt responsible for assessing and promoting medication adherence, only a minority of them asked detailed questions about adherence.
- Although providers often checked medications a patient was taking, they rarely explicitly assessed adherence to these medications.
- Many physicians expressed discomfort about intruding into patients’ territory to detect non-adherence. In the office, they rarely asked about missed medication doses.
- Most cases of non-adherence detected during office visit were revealed through unprompted patient comments.
This sounds to me like doctors fully expect patients to be 100% compliant (despite years of published research warning that this is just not happening) – so much so that they’d rather just assume this to be the case unless patients volunteer their own non-compliance confessions!
This is also the case with me, In fact, neither my family doctor nor any of my specialists have ever once asked me a simple question about whether or not I’m taking my meds as directed each day. (Did I mention how much I hate taking my pills?)
Couple that reality with a perceived lack of interest from any health care providers. Some days I surprise even myself by continuing to take my meds under these circumstances, because I too seem to possess a certain “potential for mindful non-adherence.”
Speaking of a perceived lack of interest in one’s patients, physicians seem remarkably uninterested in the financial capacity of their patients to be able to afford to fill prescriptions. As longtime chronically ill patient and advocate of the underserved Erin Gilmerwrote about those who believe non-compliance is a problem that just needs more technology thrown at it:
“I am frustrated by the prescriptions and ‘solutions’ offered. I don’t want an app to tell me how to track my fitness goals – but that’s what is popular.
“Digital medication reminders are not what I need when I’m poor and can’t afford medicine.”
I read an interesting analogy recently that helped me to understand the issue of non-compliance, particularly when patients are not involved with their physicians in meaningful treatment decision-making.
The analogy was this: imagine that your longtime financial planner hands you a piece of paper instructing you to set aside 20% of your income from now on in specific secure investments for your retirement fund, instructions based on her considerable experience and known expertise in such matters. You like your financial planner and respect her counsel, but for many reasons that she is unaware of, you decide not to do this. Later on, you show up for your regular portfolio review, at which time your advisor indignantly labels you “non-compliant” because you didn’t follow her sound investment advice.
This would never happen.
NOTE FROM CAROLYN: I wrote much more about this and other ways that heart patients adapt to their diagnoses in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
(1) T. W. Loong et al. “Primary Non-Compliance in Singapore Polyclinic.” Singapore Medical Journal. 1999; Vol 40(11).
(2) X. S. Ren et al. “Identifying patient and physician characteristics that affect compliance with antihypertensive medications.” Journal of Clinical Pharmacy and Therapeutics. Volume 27, Issue 1. 47–56, February 2002.
(3) Derjung M. Tarn et al. Provider Views About Responsibility for Medication Adherence and Content of Physician-Older Patient Discussions. Journal of the American Geriatrics Society, 2012; 60 (6): 1019
Q: Why do you think so many of us don’t take our prescription medications?