Patient Adherence Research Paper

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1. Overview

Research conducted since the 1970s has demonstrated that, on average, about 40 percent (and in some cases as many as 90 percent) of patients fail to adhere to the recommendations they have received from their physicians for prevention or treatment of acute or chronic conditions. This is a serious problem known in the medical literature both as ‘patient nonadherence’ and ‘patient noncompliance.’ The broadest definition of the terms is that a patient fails to manifest behaviorally the health professional’s (usually physician’s) intended treatment regimen. It consists of such actions as the patient failing to take antibiotics correctly, forgetting or refusing to take hypertension medication, forgoing important health habits, and persisting in a dangerous and unhealthy lifestyle. As a result of failure to adhere, many patients become more and more seriously ill, they develop infections that are resistant to treatment, physicians alter patients’ treatments based on misunderstanding of its initial effects, physicians are misled about the correct diagnosis, and the time and money spent on the medical visit is wasted (for reviews see DiMatteo and DiNicola 1982, Meichenbaum and Turk 1987, Myers and Midence 1998, Shumaker et al. 1998).

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2. The Conceptual And Clinical Importance Of Adherence

The issue of patient adherence has both conceptual and clinical implications. In the realm of clinical medicine, the decade of the 1990s brought amazing advances in the treatment of both acute and chronic illnesses, vastly improving quality of life for those suffering from them. Even HIV has promising treatments in the form of highly active antiretroviral therapies. Attempts at managing medical costs have enhanced the focus on preventive services. There are concerns, however, about the re-emergence of infectious diseases, as some bacterial infections that were once straightforwardly treated with antibiotics remain resistant even to the most powerful antibiotics. In HIV, viral resistance to the protease inhibitors has emerged just when control of the disease seemed possible. It is now recognized that noncompliance may be one of the major causes of these reductions in the efficacy of medical treatments, the proliferation of drug resistance, and the waste of billions of health care dollars.

In the conceptual realm, the achievement of patient adherence involves the phenomenon of social influence. A health professional essentially tries to influence a patient to change their behavior. Because medical care is delivered through the interpersonal interaction between health professional and patient, it may be best understood as a social psychological phenomenon. Thus, relevant are issues of communication, trust, persuasion, social normative influence, social reinforcement, and social support.

The understanding of compliance adherence is complicated further by the philosophical issue of patient self-determination, often examined in detail in writings on medical ethics. It is also affected by issues of information processing, understanding, and retrieval, and the sometime interaction of these issues with that of self-determination. For example, a patient might be noncompliant simply because they never understood the regimen in the first place due to anxiety in the presence of the physician. This patient would follow the regimen had they understood it. Another patient might conveniently ‘forget’ to follow the treatment in an effort to exert a certain amount of self-determination. Yet another patient might choose ‘alternative’ medicine therapies, instead of medically recommended ones, because the former may be both easier to understand and provide the patient with a greater sense of control. Finally, by failing to adhere, another patient might be consciously or unconsciously trying to commit suicide, either through clear-headed choice or because of severe depression.

3. Controversy Over The Term Reflects A Philosophical Issue

Historically, the behavior of following a physician’s recommendations has been termed ‘compliance,’ and reviewing the literature from indexed databases, particularly before 1990, has required the use of this term. Some writers (see Haug and Lavin 1983) have argued that the term compliance implies coercion, emphasizing paternalistic control on the part of the physician. Many writers have more recently used the term adherence,’ which seems to imply that the patient, in a more self-determining manner, ‘sticks to’ the regimen if they choose to do so. Still others have argued that the appropriate term is ‘cooperation,’ which patient and physician may or may not achieve, depending upon their willingness and ability to negotiate effectively with one another. Studies do show that patient adherence is highly dependent upon patient involvement in medical choices and patient commitment to treatment decisions, and so cooperation, as well as participation, negotiation, and partnership are essential. The use of all these terms creates, of course, an indexing nightmare, and so the terms ‘adherence’ and ‘compliance’ have remained dominant. Although not always referred to as such in indexing, research on aspects of patient self-determination suggests it to be an essential element in adherence and health behavior change.

Whatever it is to be called, the phenomenon of a patient following through with a health professional’s treatment recommendations is not a simple achievement. Given the potential for difficulties at several steps—from the physician conveying information about the regimen, to the patient remembering what was conveyed, to the patient wanting to carry out the behavior, to actually overcoming all the difficulties of doing so—one can easily understand why noncompliance rates are very high.

4. Theories Guiding The Research

Various theoretical models have driven, in some fashion or another, the research on patient adherence. They include social cognition approaches that emphasize the patient’s thoughts and beliefs as primary influences on adherence behavior. Many theories use a value expectancy paradigm, in which behavior in response to a threat to health arises from expectations that the action will be self-protective. The Health Belief Model is one such approach, and it emphasizes thoughts regarding risks and benefits of the recommended course of action (Janz and Becker 1984). The Theory of Reasoned Action takes account of beliefs and of social influences, and emphasizes the role of intentions and their tenuous connection to action. The Theory of Planned Behavior adds to this a consideration of perceived behavioral control and perceived barriers to action (Ajzen 1985). There are also attribution theories, in which people are posited to be concerned with explaining the causes of events in terms of their locus of control (internal vs. external), stability, and universality (Wallston et al. 1994).

Some models are based on efficacy beliefs regarding both the ability of the self to carry out the target behavior, and of the action to affect the intended outcome. There are likely to be limitations to linear rationality in decision making, and recent modifications of the social cognition approach have tried to take these limitations into account. One of these modifications is the Transtheoretical, or Stages of Change, Model that proposes that adherence occurs through progressive, nonlinear stages or steps of behavior modification and maintenance (Prochaska and DiClemente 1983). Finally, self-regulatory models view the patient as an active problem solver who strives to achieve a health goal by identifying the health threat, developing and implementing an action plan or coping procedure to deal with the threat, and appraising the outcome of the action (Leventhal and Cameron 1987).

No single model is universally valid, or even helpful, in the study of adherence, particularly because the complexity of treatment regimens varies widely from one disease to another. An approach that organizes the research on adherence in terms of a purely biomedical model tends to classify and analyze adherence studies by disease conditions and finds some interesting trends and patterns that might provide clinically relevant insights for the care of specific disease conditions. The difficulty with this approach, however, has been that similarities in psychosocial phenomena across disease conditions are not apparent, and findings that could be applicable to all patients may remain undiscovered. Focusing solely on psychosocial issues, without regard to the uniqueness of disease conditions, may introduce too much variation into the analysis, making trends difficult to determine. A combined ‘biopsychosocial’ approach, on the other hand, allows for the analysis of psychosocial factors in the context of the specifics of various diseases and treatment conditions.

5. Limitations In The Literature

Since 1968, there have been over 9,000 papers published about patient adherence (or its alternate name, patient compliance), with a ratio of more than two reviews opinion pieces to one empirical article (Trostle 1997). Most of the empirical publications have examined only one or two predictors of adherence, either in an observational study or in an intervention to improve adherence compliance. These studies have demonstrated, not surprisingly, that doing something to help patients comply is better than doing nothing, and that compliance can usually be found to correlate with something about the patient (e.g., motivation), the regimen (e.g., its complexity), or the interaction between patient and health professional (e.g., communication). Studies that have examined several elements of this very complex phenomenon are, on the other hand, rather few and far between. Most chronic illnesses, where adherence is very difficult (e.g., adolescent diabetes), are quite demanding psychologically and behaviorally. Designing and maintaining an effective treatment package requires understanding the entire picture of compliance, from communication of the regimen to its implementation. Unless the phenomenon is fully understood in all its complexity, it is impossible to know when, where, and how it might be best to intervene to help patients to adhere.

6. A Multidimensional Approach To Noncompliance

In examining how difficult and complex adherence to a treatment regimen might be, it is useful to consider a clinical example. Imagine a 48-year old, moderately overweight, borderline hypertensive, male patient who has been told by his physician that he should begin and maintain a program of regular exercise. The goals of this exercise are to reduce his weight, to lower his blood pressure, and improve his level of HDL cholesterol. He understands quite well what he is being asked to do, and he believes that exercise is important and worth the trouble and time it takes. His family and friends agree that the regimen is valuable, and encourage him to follow it. His family members remind and encourage him daily, and have even invested in a treadmill for him to use each evening. In this case, as in general, exercise compliance demands a multidimensional, multifactorial approach because changing the sedentary habits of a lifetime can be very difficult and often meet with failure. Even among rather seriously at-risk patients, such as who have cardiovascular disease, diabetes, or a previous myocardial infarction, there is a 30–70 percent dropout rate from exercise. In such situations, as with our example patient here, people may have very positive attitudes toward exercise, and even strong networks of social support, but still fail. Maintenance of these very complex behavioral changes over a long period of time requires very careful attention to many factors.

7. Factors That Affect Patient Adherence

As noted above, there tends to be something of a disjuncture between the theoretical models of adherence, most of which are multidimensional, and the empirical findings, which are primarily unidimensional. Nevertheless, the empirical studies tell us some important facts about adherence that are useful both clinically and in terms of how they contribute, albeit in a limited fashion, to the theoretical models. Patient demographics, for example, are thought by many clinicians to be the best predictors of patient adherence. Physicians tend to use easily available information from the clinical encounter to steer their attention to those they believe to be at highest risk for nonadherence. Despite physician beliefs, however, patient age and gender seem to have very little relationship to adherence (except, perhaps, that adolescents tend to have more problems adhering than other age groups). Further, although lower income patients and those with more limited education have somewhat lower levels of adherence than more affluent and educated patients, the effect is quite small, and not nearly as important as that of other variables that can be altered.

Psychological variables, such as attributions, locus of control, and beliefs, while important in the models noted above, have not shown consistent effects on adherence. For example, believing that a disease is severe may in some cases prompt a person to take consistent action to avoid or treat that disease, and in other cases bring about denial and reckless abandonment of the regimen. On the other hand, the effect of another psychological variable—depression—on adherence is potentially noteworthy and should be examined further. Depression may bring about hopelessness and isolation, two phenomena that reduce adherence considerably; but it may be entirely treatable.

Adherence has been found consistently to be dependent on the patient’s social support system and family marital environment. Further, a regimen’s complexity and adverse effects must not be overlooked by physicians when making a medical recommendation; much research has found that nonadherence is related to long-term regimens with complex and confusing dosages and scheduling. Health professional-patient communication seems to affect adherence as well. Because of limitations in communication during the medical visit, patients may misunderstand what they are to do, and the anxiety of the situation tends to interfere with recall at a later time. The sensitivity and empathy in physician–patient communication often matters as well, because patients tend to be more likely to try to adhere to recommendations given by health professionals that they like and trust. Patients’ health beliefs and attitudes, often influenced by their cultural patterns and expectations, may conflict with the regimen, making adherence difficult, and practical barriers, such as side effects and lack of necessary resources, may interfere with the regimen. Finally, studies show that physicians typically do not know whether or not their patients are adherent. They overestimate the degree to which their patients follow their directives, and are typically unable to identify which patients are having adherence problems. Yet, the accurate assessment of adherence is essential because achievement of adherence has been shown to make an important difference in patient outcomes and patient health status.

8. Research Challenges

A major research challenge in the field of adherence involves its measurement. It seems obvious that one good way to measure adherence would be simply to ask the patient. In fact, most adherence research and clinical practices have relied upon the technique of self-report, although such an approach may be biased by self-presentation and by patients’ fears of reprimand by the physician. Reports of spouses or other health professionals can be useful, but these reports may vary in accuracy depending upon the opportunity to observe the patient’s daily activities. Techniques such as pill counts, patient behavioral diaries, and electronic recording devices have their own drawbacks, including patient manipulation toward the goal of concealing nonadherence. Tests, such as urine or blood assay, may be useful for medication, but tend to reflect only its recent consumption. Physician reports and chart entries are unreliable and are often based on unclear criteria. Because there is no ‘gold standard,’ convergence of the findings of research is more difficult to achieve. Necessary to the field is the development and implementation of methods for building therapeutic trust so that patients can be forthcoming and frank about their difficulties in following treatment suggestions, and both measurement and adherence itself can be improved (Hays and DiMatteo 1987).

A second issue of concern is that most reviews of adherence have been qualitative. Many writers, including this author, have described extensively the factors that influence patient adherence, ranging from the importance of physicians’ communication skills to how simple or complex the regimen should be. Although these reviews have attempted to be exhaustive, their conclusions have been biased by several factors including limited sampling of the population of empirical studies, and entrenched, established social psychological (or other) models of behavior guiding their organization. Further, when studies are listed and the effects of different variables on adherence are described, there are invariably conflicting results that cannot be resolved qualitatively. When there is a huge amount of research available, such as on adherence, it is possible to review only a sampling of it, resulting in further bias unless that sampling is random. One good quantitative assessment of a complete set of empirical studies, however, is worth many expert opinions and reviews. Fully understanding all of the complex elements of adherence involves painstakingly organizing, reviewing, and quantitatively summarizing the entire abundant literature on each variable related to adherence employing the research technique of metaanalysis. Nothing short of this will provide the clear answers that are necessary. Such an approach would allow for a better overall understanding of the complex relationships between adherence and characteristics of patients, their lives, their diseases, their regimens, the therapeutic relationship, and the context of medical care delivery.

Finally, conceptual and empirical work is necessary to remedy the common confusion of adherence behaviors with adherence outcomes. A patient might carry out flawlessly every behavioral requirement of care, but the outcome may remain disappointing. Research must pay scrupulous attention to the accurate assessment of behavior, and recognize that physiological measures of outcome should never serve as proxies for adherence. The independent effect of adherence on achieving health outcomes, health status, functional status, psychological and social functioning, and all aspects of health related quality of life needs to be examined.

9. Conclusion

As noted above, despite the complexity and multidimensionality of theoretical models of adherence, nearly all of the research has examined individual factors that correlate with adherence. These empirical investigations have provided some useful answers about adherence, but the theory that could be helpful in guiding our research questions remains disconnected from it. Fully understanding adherence has remained an elusive goal because reviews of the literature have been equivocal. Clear answers are necessary, however, as some of these questions have strong clinical and policy implications.

This review of the literature has attempted to view it as a whole, to the extent that a qualitative approach can do so, and to point out its strengths, limitations, and promising trends. At this point in time, there are many reviews, and not enough well designed, well executed, multidimensional, longitudinal empirical studies of adherence. Now that we have a compilation of studies in the univariate realm, it is necessary to work toward multifactorial explanatory approaches to adherence. These models need to examine simultaneously the effect of social, psychological, and biological variables on adherence, and to examine their unique interactional effects. Only then will a full and clear picture of this complicated phenomenon emerge.


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