It's a veritable epidemic that afflicts almost half the patients for whom medications are prescribed, and it accounts for almost 6 percent of hospital admissions. It leaves patients ashamed and doctors frustrated. Medicine's secret for decades, it's now the subject of extensive research leading to fresh understanding of its remedies. This condition, encountered daily by family physicians, is as simple as skipping breakfast and as complicated as a television soap opera.
Its traditional name — noncompliance — is misleading and may even be a symptom of the disease. “The word compliance implies that the patient should do what the doctor orders,” says Mark B. Mengel, MD, who directs the family practice residency program at Beverly Hospital in Beverly, Mass. “But an authoritarian approach doesn't lead to the best health outcomes. Doctors need to be more patient-centered.” Patient centered, in this context, means treating patients as partners, involving them in planning their health care and encouraging them to take responsibility for their own health. Research shows that patients are more likely to take their pills, lay off the sour cream and show up for appointments when allowed to help shape their treatment plans. Such results are called patient adherence nowadays, a term that gets away from the image of doctors as white-coated police officers. (See “A comprehensive strategy is the key to adherence, researchers say.”)
Family physicians deserve much of the credit for putting the patient on center stage. “One reason why our specialty sprang up was to provide an antidote for high-tech specialty care that didn't respect patients' values and concerns,” says Mengel. Patient-centered care emerged as a full-fledged medical model in the 1970s, thanks in large measure to family physicians at the University of Western Ontario in Canada, led by Ian R. McWhinney, MD. Today, Mengel is just one of many family physicians who carry on this legacy. He's a co-founder and board member of Common Ground Solutions, a nonprofit group that teaches health professionals how to talk with (not to) patients.
Adherence can be promoted by using easily learned communication skills that are part of patient-centered medicine. They range from phrasing questions in ways that elicit information efficiently to simply not interrupting patients while they're talking. Physicians tend to fear that using these techniques will lengthen the average office visit (a justifiable fear in the productivity-obsessed managed care era), but proponents of the new methodology say that this won't happen. Indeed, progressive managed care companies are hiring experts like Mengel to coach other doctors on the new techniques. “It's less expensive to promote adherence than to hospitalize people because they haven't taken their blood pressure medicine,” observes Jacqelyn Admire, assistant director of the Scientific Activities Division of the AAFP.
A comprehensive strategy is the key to adherence, researchers say
Educating patients about their diseases and treatment plans is a must if you want them to follow through with medication, new diets and other lifestyle changes. The best results, however, come when you combine education with behavior modification strategies and emotional support.
That's a key lesson from a soon-to-be-published analysis of research on interventions to improve patient adherence. A team of researchers led by Debra L. Roter, DrPH, a professor of health policy and management at Johns Hopkins University School of Hygiene and Public Health, conducted a meta-analysis, the findings of which will be published in an upcoming issue of Medical Care. Roter's group looked at 153 studies published between 1979 and 1995. Indicators of adherence included actual outcomes such as blood pressure, process-oriented information (e.g., refill records), subjective impressions (e.g., self-reports of adherence) and patient knowledge. The interventions fell into three categories:
Educational: Information conveyed verbally and in writing;
Behavioral: Telephone reminders, patient contracts, skill building, drug packaging;
Affective: Counseling, home visits, family support.
In general, the more comprehensive the approach, the more adherence improved, according to Roter's team. When it came to adherence as measured by health outcomes, for example, interventions that combined all three categories — educational, behavioral and affective — were almost twice as effective as education alone.
Group education outperforms other types of educational intervention, according to the meta-analysis. Not surprisingly, it has a strong affective component. “You not only hear information, but you get to interact with others, compare experiences and collect tips,” says Roter. “You have a sense that you're not alone, that others have dealt with your problem. This gives you courage.”
Underestimating the problem
Number crunchers can find plenty to crunch in statistics on patient nonadherence. They're big. “By and large, the research indicates that at least half the patients who've been given a prescription don't receive the full benefit of the drug because of not taking the drug at all, not taking the right dosage or stopping prematurely,” says Debra L. Roter, DrPH, a professor of health policy and management at Johns Hopkins University School of Hygiene and Public Health. The figures for certain chronic diseases are just as scary, according to researchers. Between 40 percent and 50 percent of diabetic patients don't abide by their medication regimens.1 The comparable figure for hypertensive patients is 40 percent.2
Surprised? You may have a lot of company. “Physicians tend to underestimate the number of patients who aren't compliant,” says Sherrie H. Kaplan, PhD, another leading light in the field of patient adherence. Kaplan is co-director of the Primary Care Outcomes Research Institute in Boston and an associate professor of medicine at Tufts University Medical School. But physicians must contend with the consequences of the problem, whether or not they correctly gauge its depth. One study estimated that roughly 6 percent of hospital admissions — almost 2 million a year — could be traced to nonadherence.3
The causes of nonadherence are complicated, but some information about them is available. A survey commissioned by Upjohn Co., for example, determined that 20 percent of the respondents had failed to have a prescription filled during the preceding 12 months.4 Of these individuals, 51 percent said they didn't think they needed the medication. Another 21.7 percent said they simply didn't want to take it. Similar findings surfaced in a survey on unfilled prescriptions sponsored by the American Association of Retired Persons (AARP). Twenty-one percent of the respondents thought the medicine wouldn't work. Side effects worried 22 percent.5 The issue of affordability arose for only 10.5 percent and 14 percent of patients in the Upjohn and AARP surveys, respectively. This suggests that nonadherence arises less from pocketbook issues than from patients' beliefs and attitudes.
Yet adherence experts say that these beliefs and attitudes lie mostly submerged, like icebergs, when doctors and patients talk. All too often the necessary dialogue does not occur, in substantial part because the medical education system has taught physicians to view patients as disease puzzles to solve rather than as people to listen to. “Think about what happens in a typical doctor-patient encounter,” says John Hawks, president of Comsort, a Baltimore-based group that trains physicians in communication skills. “A person comes in with two or three complaints. The doctor interrupts within 18 seconds after the first problem is presented and grills him on the symptoms, using a series of closed-ended questions to be answered either yes or no. He makes a diagnosis and writes a prescription, and when he hands it to the patient it's a signal that the visit is over,” says Hawks. “But the patient may not have mentioned his most serious complaint. So how motivated will he be to take his medicine? He may not be at all confident that the drug will help.”
The right exam-room style
A growing body of research published over the past 20 years has shown that the nature of the physician-patient conversation has a direct bearing on adherence. A groundbreaking 1976 study looked at patients with hypertension, a group well known for neglecting to take their medicine because their disease often has no symptoms.6 The researchers looked at outcomes for patients of a group of doctors who had been tutored to probe for nonadherence and its causes, discuss personal beliefs about the disease and focus more on education. Sixty-one percent of these patients took their medicines regularly compared to 32 percent for a control group whose physicians had not undergone the same coaching. The gap was equally wide when blood pressure control was assessed: it was satisfactory for 69 percent of the experimental group but for only 36 percent of the control group.
More recent studies have shown that adherence and patient satisfaction both increase when physicians give more information to patients, ask them what they think or feel, and inquire about their “track record” in taking medicines on schedule. “Even the tone of voice has been shown to affect whether patients keep their appointments,” says Roter. It would be wrong, though, to pigeonhole doctors whose communication style doesn't encourage adherence as cold and unfeeling. “Some physicians are well-meaning and empathic but fail to build therapeutic relationships with patients that consider their beliefs and values,” says Roter. “A patient may say, ‘He's such a kind doctor,’ but the doctor may still lack the communication skills necessary to engage the patient.”
Patient education must be adjusted to individual levels of interest, prior knowledge and ability to absorb new information. Rather than teaching everything the doctor knows about a particular disease, the physician should focus on what the patient needs to know to be an effective partner in his or her health care.
The key: “Find out more”
Communication skills that promote adherence aren't difficult to acquire. Denver internist Frederic W. Platt, MD, who has written two books on physician-patient communication, boils it down to three words: Find out more. Here's how that advice plays out in a medical encounter, as recommended by Platt and other adherence experts.
Agree on the problem. Find out whether you and the patient agree on what the problem is. “A patient with a headache may believe that it is caused by a sinus infection, which should be treated with an antibiotic,” says Platt. “You, the doctor, may believe that it's migraine and needs a different medicine. If you don't iron out this difference, the patient may not take the product you prescribe.”
Negotiate reasonable goals. Once you and the patient agree on the diagnosis, set attainable goals. “If a hypertensive patient has a diastolic blood pressure of 120, you may not want to try to bring it down below 90 immediately,” says Mengel. “You may suggest 110 as a short-term objective. Once this has been achieved you can use that success to motivate the patient to reduce it even more. But if the initial goal is unrealistic, you set up the patient for failure.”
Ann C. Jobe, MD, senior associate dean and a professor of family medicine at East Carolina University School of Medicine, took this incremental approach with a diabetic woman on insulin whose diet included too many sweets. “She was drinking 12 cans of soda a day,” says Jobe, another co-founder and board member of Common Ground Solutions. “I said, ‘Why don't you begin to get your diet under control by drinking diet sodas?’ This was easily done, and it was an important first step in turning the corner and getting her to the point where she no longer needed insulin.”
Generate options. There's more than one diet for losing weight, and there's more than one drug to treat depression. Acknowledging that gives the patient scope for involvement in his or her care. Mengel suggests reviewing a reasonable range of treatment options, discussing the benefits and possible side effects of each one in terms the patient can understand. Then, Mengel says, “Ask the patient what he thinks might work.”
Decide on a mutually agreeable and feasible regimen. Doctor and patient can choose a medical option that makes sense in the patient's life, says Mengel. “A patient with hypertension, for example, may have just remarried and doesn't want a low-cost drug that could reduce sexual drive. So he or she may opt for a high-cost product with no sexual side effects.” Dosage frequency requires a similar discussion. “Once-a-day drugs can improve adherence because they simplify dosage,” says Jobe. “However, they could discourage low-income patients from filling their prescriptions if they're more expensive on a daily basis than a multiple-dose version of the same agent. Some may be better off with a less expensive, three-times-a-day version.”
In many instances, adherence hinges both on the patient and on his or her family. “I routinely counseled couples together when I prescribed dietary changes for men whose wives did the cooking,” says Robert D. Gillette, MD, a semiretired family physician and member of the FPM Board of Editors. “Success depended on the wife's understanding the need and being motivated to meet it. She could undercut the program, either inadvertently or intentionally, if she was left out of the loop.”
Test the patient's knowledge. Platt advises doctors to have patients repeat what they've been told about their illness and treatment plan. “You can say, ‘Tell me what you understand about your illness.’ Likewise, ask them to explain their treatment plan, just as if they were talking to their spouse,” says Platt. It's also important for patients to demonstrate any techniques they've been taught, such as injecting insulin or using a peak flow meter. Like many other physicians, Platt has diabetic patients practice needle sticks in his office using an orange.
Screen for readiness. Platt asks two final questions at the end of an encounter that allow him to screen for nonadherence one more time. The first is, “On a scale of 1 to 10, how important do you think it is for you to do the things we've been talking about?” “You might discover, for example, that a diabetic is convinced that his disease will kill him as it did his mother, and that any treatment is futile. You will obviously need to talk more about the disease and its management if a belief of this type surfaces,” says Platt.
The second question is, “On a scale of 1 to 10, how confident are you that you can adhere to this treatment regimen?” “A smoker who is absolutely convinced that he needs to give up cigarettes may have a confidence level of 1 that he can actually do so,” says Platt. “That's a sign that you need to counsel and support the patient closely during the withdrawal process.”
Keeping patients on track
Once a patient embarks on a course of treatment, you need to ensure that he or she stays on course. That means checking on adherence, which requires professional finesse. Most patients are reluctant to admit that they haven't taken their pills or followed their low-fat diet, even if they have understandable reasons. Many will tell fibs rather than appear irresponsible. The stigma that many doctors attach to nonadherence may exacerbate patients' guilt.
The effective physician asks about nonadherence in a nonjudgmental way. As Hawks suggests, “You can say, ‘A lot of people find it difficult to take their pills 100 percent of the time. Tell me about your experience.’ It's an open-ended question that elicits far more information than just asking, “Are you taking your pills?” Once the patient admits to nonadherence, you can talk about ways to get back on track. If cost is the problem, consider referring the patient to a pharmaceutical-company program that makes the company's products available free or at low cost. “If the patient says, ‘I feel fine without the medicine,’ talk about the long-term risks of diseases that may have no symptoms,” advises Hawks.
Offer your congratulations if you find that the patient is following the treatment plan. “We need to praise patients when they're making any kind of progress,” notes Jobe. Likewise, Gillette says that doctors should accept less-than-perfect short-term results for the sake of promoting long-term change. “Human fallibility is a given, and achievement-oriented doctors need to learn to accept it. Besides, it may take time for a person to learn to take pills regularly,” he says. “Physicians may be tempted to give up on patients with adherence problems, but experience has shown that many of them can be educated and persuaded to do better over the long term.”
Evidence abounds that patient-centered communication skills promote adherence, but will they prove effective in all situations? For example, can elderly patients with cognitive problems play a meaningful role in planning their medical care? The elderly tend to take more medications than younger people, so the need to promote adherence among them is particularly strong. That prospect doesn't discourage Jobe. “Despite whatever cognitive problems they have, they're still the best source of information about their preferences, values and lifestyles,” says Jobe. “If they're demented and can't make sound decisions, then I take the patient-centered approach toward the family members who are responsible for their care.” Elderly patients can become collaborators if you teach them how, adds Joseph Lieberman III, MD, who chairs the Department of Family and Community Medicine at Christiana Care Health System in Delaware. “They've been raised to view the doctor as this paternal figure who calls the shots,” says Lieberman, coauthor of The Fifteen-Minute Hour: Applied Psychotherapy for the Primary Care Physician. “So you just have to guide them into a new role. By asking patients to talk about their feelings and opinions, you're signaling that their input is important.”
Patients talking more — that's a key element of shared medical decision making. But the prospect of such full-fledged conversations may spook doctors who worry that the office visit will last 40 minutes, setting off a revolt in the waiting room. The new era of bottom-line medicine compounds this fear. Doctors with managed care contracts often feel pressured to see a quota of four or five patients per hour. Will patient-centered communication skills blow their time budget? Roter has explored this question, and she says the answer is no. A recent study conducted by Roter and others showed that the average length of an office visit, including the physical exam, was 21 minutes, whether it was a traditional visit or patient-centered.7 “There's a lot of wasted time in physician-dominated visits because the doctor goes on and on about medical information that doesn't address what's on the patient's mind,” says Roter. “In patient-centered visits, the doctor talks less and the patient says more.”
Jobe takes a similar position. “The principle of reaching common ground has allowed me to use my time more efficiently with patients. We talk about the most important subjects, and I don't hear them saying, ‘Oh, by the way’ as they walk out the door.”
“Managed care companies recognize the value of engaging the patient along these lines for the sake of adherence,” says Vaughn Keller, associate director, education, the Bayer Institute for Health Care Communication in West Haven, Conn. “It's in their best interest to keep their patients healthy. Groups like Kaiser Permanente have launched fairly extensive programs to teach physicians how to influence patient behavior.”
Note the choice of words — influencing behavior, not controlling it. “Doctor's orders” are often ignored. Patient-centered care recognizes the value of making patients partners, not pawns, in the healing process. Talk with them the right way, and more likely than not they'll make the right choices.