Informed Adherence: The Need for Shared Medical Decision Making

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Abstract

Screening tests for colon cancer, breast cancer, and elevated serum cholesterol are widely advocated and included in some practice guidelines. Failure to complete these tests is regarded as patient noncompliance. The purpose of this paper is to review noncompliance with screening tests from the perspective of a traditional biomedical model and an outcomes model. According to the traditional biomedical model, compliance with screening tests is necessary to identify disease at an early stage and to initiate treatment. In contrast, the outcomes model argues that patients and providers should engage in activities that maximize benefit from the patient's perspective. Screening may lead to significant increases in case identification and in treatment rates. However, screening might also identify “pseudodisease,” defined as disease that is not clinically important. For some diagnostic tests, cases of pseudodisease far exceed cases of clinically meaningful disease. The outcomes model suggests shared medical decision making in which uncertainties surrounding tests are disclosed to patients. Using information about the risks and expected health outcomes of screening and treatment, patients can participate in decisions about their own health care. Control Clin Trials 2000;21:233S–240S

Introduction

Nearly all medical encounters end with advice and recommendations. Patients are advised to fill a prescription, take a medication, stay on a prescribed diet or give up cigarettes. Adherence is defined as the degree to which the patient follows this advice. The intent of attempts to increase adherence is to increase the likelihood that a goal (i.e., health) is achieved. We will argue that blind adherence to medical advice may help medical research answer an isolated question, but that understanding patients' needs and respecting their ability to make informed decisions should be considered in clinical care as well as in controlled clinical trials.

Published figures suggest that nonadherence rates vary between 15 and 93%, depending on the patient population and definition of adherence. Most studies suggest that at least a third of patients fail to adhere to treatment recommendations, while rates tend to be higher for patients with chronic conditions 1, 2. A large amount of literature suggests nonadherence results in adverse consequences for consumers of health care 1, 3, 4. However, experimental studies in different areas of behavioral intervention and medical care show positive direct effects of adherence; that is, patients who adhere with treatment have better health outcomes regardless of whether they are on active treatment or placebo [5]. Patient active participation in choice of and commitment to treatment may be a crucial component of treatment efficacy 6, 7. Incorporating the idea of increasing patient choice with the assumption that controlled clinical trials are the optimum vehicle for understanding the effects of a treatment presents quite a conundrum.

In this paper, we challenge the idea that nonadherence results in poorer patient outcomes. Using an outcomes model to better quantify the consequences of nonadherence is a first step in better understanding the role adherence plays in both clinical medicine and clinical research. If adherence is not shown to consistently produce better outcomes than nonadherence, continuing to exclude the patient in treatment decisions would be inexcusable. Shared decision making involving both patient and provider is the logical extension of patient-oriented health care and should be incorporated into both research and health-care interventions.

Section snippets

Biomedical and outcomes models

Health care has been dominated by a traditional biomedical model. According to this model, human pain and suffering are caused by disease processes. Disease activity is measured by judgments of trained physicians and by physiological measures, including blood chemistry and radiographic evidence of pathology. The purpose of medicine is to find disease pathology and to fix it. For problems such as high blood pressure, for example, the physician's task is to diagnose the problem and administer a

Compliance, adherence, cooperation

The progression of terminology about adherence used over the past two decades reflects a growing trend toward more active involvement of patients in health-care decisions. While the term “adherence” is somewhat more neutral than “compliance,” it still implies that the patients should stick with the advice given to them by a professional provider. Use of the term “cooperation” implies that the doctor and the patient are working together as a team. Positive consequences result from such

Shared decision making

The argument made in the previous section is that decisions about screening and options for treatment are very difficult and that if positive outcomes are uncertain or unlikely, the patient's preferences should be included in the decision-making process. Russell, in her controversial book Educated Guesses, concludes that educated guesses support current policy to screen for high cholesterol, prostate cancer, and cervical cancer [9]. However, there is equally good evidence supporting educated

Clinical trials

In clinical trials research, some issues should be considered. First, clinical trials should include generalized measures of health-related quality of life. Not only do we need to know whether or not medicines affect a biological process, we must also understand how medicines affect patients. Randomized trials can be used to estimate whether there is an overall treatment effect. Beyond this, we need to learn whether adherence to treatment (or to placebo) produces benefit from the patient's

Conclusion

Fully understanding nonadherence requires the ability to explore different perspectives. While previous opinions about nonadherence have assumed a medical model that views the patient as a passive recipient of medical technology, we prefer an outcomes-oriented model that includes the patient's values and preferences in the treatment decision-making process. There are typically several therapeutic options, and patients must participate in decisions that will maximize benefits for themselves.

Acknowledgements

This work was supported by a grant to Dr. Kaplan from the American Cancer Society and by grant R01 HS 09170 from the Agency for Health Care Policy and Research. Funding for the converence from which this paper evolved and for postconference publication was provided by Merck & Co., Inc., National Institute on Aging (1R13AG16229-01), NIH Office of Behavioral and Social Science Research, and Wyeth-Ayerst Laboratories.

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