Patient Adherence Explained

Tales from the forefront of an ongoing struggle, unknown to most patients:

Joanne, a 48-year-old middle class mother of three, lives in a mid-sized town in New Jersey. In Joanne’s medicine cabinet are half a dozen nearly empty bottles of antibiotics, all left over from various infections contracted by her children over the years. Her children typically stop taking the antibiotics once their symptoms subside; occasionally, Joanne will administer the leftovers to the same or other children if they seem to contract the same illness.

Raymond, her childhood friend, a high-priced attorney in San Francisco, was diagnosed several years ago with high cholesterol. Because the medication his physician prescribed causes him severe indigestion, Raymond takes it only about half as often as prescribed.

Anne, Raymond’s grandmother, is 97 years of age and resides in an assisted living community; on any given day, Anne takes nine different medications, some multiple times a day. She admits that she has considerable difficulty remembering when and how often to take them.

Modern medical science has come farther faster than most would ever have guessed. As a consumer, you now have access to an unprecedented arsenal of medications, devices, and techniques to help keep you healthy; you also have access to a huge quantity of information, thanks to the increasing importance of the Internet as a healthcare education tool. Unfortunately, a still-prominent communication gap between patients and their physicians continues to reduce the overall efficiency of the process, as the former—both intentionally and unknowingly, for a wide variety of reasons—misinterpret, circumvent, or ignore the advice of the latter.

The medical community refers to this phenomenon as “noncompliance.” In his 1979 book Compliance in Health Care, Brian Haynes, MD, offered this enduring definition of compliance (or adherence): “the extent to which a person’s behavior (in terms of taking medications, following diets, or executing lifestyle changes) coincides with medical or health advice.” When an individual patient does not adhere to the instructions of his or her physician, there are negative consequences for both that patient and for the community as a whole.

The Trouble With Nonadherence

To understand why, consider the three stories outlined above. Joanne certainly means well. Her children’s symptoms have disappeared by the time they discontinue antibiotic use; in her mind, conserving antibiotics for later use is frugal and prudent. Unfortunately, her actions are also incredibly frustrating for infectious disease professionals. Antibiotics, as most consumers are aware, function by killing the bacteria that cause sickness. The symptoms of an illness may disappear altogether even if a certain amount of bacteria remains in the system of the infected individual; discontinuing antibiotic use at this time allows those remaining bacteria to survive. Obviously, the surviving bugs are the ones most naturally resistant to the antibiotic used; when such bacteria breed with one another, succeeding generations will be even more resistant to the drug. These hardier, more resistant bacteria can then spread to others. Repeat this process hundreds of times, and eventually the bacteria will evolve into a strain completely immune to that particular antibiotic. This is called antibiotic resistance, and it has already rendered many a once-valued medication essentially useless.

In Raymond’s case, the cholesterol-lowering agent he has been given only functions correctly when used according to a certain schedule. By taking it less frequently than he should, Raymond is receiving suboptimal benefit. By way of contrast, Anne certainly intends to use her medication properly, but her advanced age and the complexity of her treatment regimen make it all but impossible for her to do so; her health can only suffer for it.

Leaving aside our individual examples, how widespread and serious is this problem? Overall, US patients are nonadherent in 20%–80% of cases, depending upon the type of illness and the treatment strategy prescribed; the Pharmacy Benefit Guide recently reported that nonadherence may run as high as 85% among patients with asthma. On average, about half of all patients nationwide use their medication improperly; the World Health Organization has reported that this problem is even more widespread in less developed nations.

Every year, nonadherence leads to an estimated 125,000 potentially preventable deaths, and is associated with 10%–25% of all nursing home admissions and hospitalizations. According to data from the National Pharmaceutical Council and the Institute of Medicine, $75–$100 billion in annual healthcare expenditures are attributable to patient nonadherence (and these figures don’t even account for the cost increases associated with increasing bacterial resistance, which are difficult to quantify accurately).

Notes Peter Jaret in a 2001 issue of Hippocrates, “In findings from the Nurses’ Health Study, epidemiologist Meir Stampfer, MD, and his colleagues at Brigham and Women’s Hospital and Harvard Medical School in Boston, recently showed that women who strictly followed advice on exercising, eating a healthy diet, and not smoking had a relative risk of coronary events of only 0.17% compared with all other women in the study.” Indeed, noted Jaret, “82% of all coronary events… could be attributed to a lack of adherence to medical advice.”
With the health benefits of proper adherence so clear, and the dangers of nonadherence so definite, why does nonadherence remain a significant problem among the increasingly educated patient in modern society? An excellent question; we’re glad you asked.

Causes and Solutions

Cynthia S. Rand, PhD, Professor of Medicine at the Johns Hopkins University School of Medicine, has identified three major subtypes of nonadherence (sidebar). Of the three, Types 1 and 3 can be grouped together, because both derive from an essential misunderstanding between physician and patient; the Type 1 patient simply does not understand the doctor’s instructions at all, while the Type 3 patient typically doesn’t understand the rationale behind them and is unwilling to blindly comply. Type 2 nonadherence, which does not involve misunderstanding and usually can be solved with practical tools, will be addressed below.

There are many factors that may lead to Type 1 nonadherence, including poor physician communication skills, patient literacy problems, mild cognitive impairment in the elderly, and so on. Dr. Rand estimates that approximately one quarter of all patients simply misunderstand (often greatly) the direction they are given.

It is Type 3 nonadherence that can be most troublesome. “A patient’s decision to not comply with medical advice may be the result of careful consideration—a phenomenon called intelligent noncompliance,” says Jaret. “Patients on chronic medications are often concerned about their dependence on a drug, for example, and may experiment with doses to feel in control.” In a considerable portion of cases—including that of Raymond, above—such noncompliance may have to do with concerns about side effects.

Dr. Rand says that Type 3 nonadherence occurs most often when patient beliefs about the nature of medicine clash with the physician’s instructions. For example, the parents of children with asthma often do not wish to administer medication to prevent asthma attacks, preferring to conserve the drug to use during an attack. “They look at their apparently healthy child who is not coughing or wheezing right now and they think it’s probably better to give the medicine when they look sick or act sick rather than take it in anticipation or to prevent getting sick,” says Rand. In other, simpler words, says Jaret, “Patients view the physician’s prescription as a guideline rather than a treatment standard.”

As a patient, the surest way you can help keep nonadherence of these types from affecting your own health is to ask your physicians as many questions as necessary to completely understand his or her instructions. Don’t worry about wasting his or her time—most doctors, no matter how busy, would much rather spend an extra 10 minutes clarifying a prescription and addressing a patient’s concerns than treat a condition worsened by nonadherence. If you’re concerned about side effects or uncertain about dosing, ask. The questions in the sidebar should serve as a good beginning; ask your doctor these—along with any others that occur to you—any time he or she prescribes a drug or treatment for you, and you should be well on your way to eliminating misunderstanding from the treatment process. The physician community is in the midst of an active effort to improve the quality of its communication with patients; assistance from the consumer side of the equation can only help.

Technology to the Rescue

As prevalent as the misunderstandings described above can become, fully half of all noncompliant patients actually understand instructions perfectly well, and simply fail to carry them out—Type 2 nonadherence, or the “I just forgot” syndrome. Patients may forget to take medication because they are naturally forgetful, because, like Anne in our opening paragraphs, they have many medications and difficulty keeping them all straight, or even because a job change or move alters a well-worn routine. Fortunately, because Type 2 nonadherence is the most easily spotted—patients who forget to take medication from time to time are usually aware of the problem; in Type 1 nonadherence, the patient is often unaware that he or she is doing anything incorrectly—it is also the most readily fixed.

A number of technology companies and other entities have developed nifty tools and applications designed to help patients adhere more strictly to a prescribed medical routine. A good example is e-pill Medication Reminders (www.epill.com), which offers a versatile series of products aimed at increasing patient compliance. Outwardly, the “Pill Reminder and Dispenser” appears to be a standard pill dispenser. However, an internal computer and clock allows the device to dispense the proper dose of the proper drug at the proper time(s) every day. Another e-pill device, a large, 16-alarm vibrating watch, can be programmed to give medication reminders throughout the day to anyone needing such reminders.

ScriptTalk (www.envisionamerica.com/scriptalk.htm) offers a “talking prescription” service for patients with sight impairments, reading difficulties, or dyslexia. Such patients may have difficulty reading the instructions on a standard bottle of medication; ScriptTalk gets around this problem by creating pill bottles that talk directly to the patient.