20: Patient Adherence

In the context of medical treatment, the term adherence refers to a patient’s success in following the recommendations of a health care provider for disease prevention and treatment. Nonadherence (also called noncompliance) refers to a patient’s failure to follow these recommendations, such as by not filling a medication prescription or by stopping the medication before being instructed to do so, improperly using a medical device, carrying out prescribed behaviors (e.g., specific exercises) incorrectly, or entirely ignoring medical advice (such as to avoid certain foods, or to engage in disease screening). Nonadherence can be purposeful or not. The term “unintentional nonadherence” is used to describe cases in which patients believe (mistakenly) that they are adhering to what has been prescribed, whereas “intentional nonadherence” is used for cases in which patients choose to disregard treatment recommendations completely or to modify their prescribed regimens.

Across a variety of disease conditions, 25% of patients (on average) do not adhere to prevention and disease management activities (including taking medications, going to medical appointments, obtaining screening, exercising, and/or dieting); for some medical conditions, adherence can be as poor as 50% or less. Adherence is a behavior that is strongly connected to health outcomes. On average, the odds of a good health outcome for patients who are adherent are 2.88 times higher than for nonadherent patients. Nonadherence can take a significant toll not only on patient health outcomes but also on providers and the health care system. At the interpersonal level, the inability to achieve health care goals due to nonadherence can be frustrating for both patients and their providers, and from a societal standpoint, nonadherence produces a significant economic burden (between $290 and $300 billion annually in the United States alone). In addition, the number of medical visits wasted annually in the United States as a result of nonadherence is estimated to be at least 240 million.

According to the World Health Organization, adherence is affected by many factors such as: (1) the health care system including the provider–patient relationship, (2) the patient’s disease type and severity, (3) the type of treatment regimen and its complexity, (4) patient characteristics, and (5) socioeconomic factors. This chapter will focus on the interplay of these factors in understanding the role of the provider–patient relationship and communication quality in effective methods for promoting adherence and chronic disease management among all, including the most vulnerable, patients. These include patients of ethnic minority status, low socioeconomic standing, low education level, and/or low health literacy. Emphasis will be placed on targeting individual patients’ needs to promote adherence through the use of a recently devised heuristic model offered by DiMatteo and colleagues, called the Information–Motivation–Strategy Model^©.

Although the elements of the Information–Motivation–Strategy Model^© (IMS Model) were first introduced in the early 1980s, there was insufficient empirical research on which to build support; now, many large-scale empirical trials and meta-analytic reviews provide evidence for the framework of the model. The primary purpose of the IMS Model is to provide health care providers with a valid and practical rubric for remembering and using three broad elements of care that are essential for improving patient adherence. The three components of the IMS Model are Information, Motivation, and Strategy. They reflect the fact that patients can follow only treatments they have been informed about and which they understand; patients will adhere only to treatments they are motivated to adhere to; and patients only do what they are able to within their resource limitations and available strategies.

Information

The information component emphasizes the importance of the knowledge held by patients about their condition and its treatment, and suggests that this knowledge depends most upon effective provider–patient communication. Patients are unlikely to follow a treatment unless its importance is clear to them and they fully comprehend the care instructions. Unintentional nonadherence commonly stems from failure at this stage in the process of care. Research from hundreds of studies indicates that for many patients, their level of health literacy is low and their ability to understand the health information they receive is inadequate. Therefore, health care providers have a responsibility to communicate effectively with their patients and to inform them thoroughly, as well as to check on how well patients understand the information that they are given. A meta-analysis found that in more than a hundred empirical studies, good physician communication skills were associated with increased patient adherence. To encourage patient adherence, health care providers should focus considerable attention on communicating information effectively and on determining patients’ degree of understanding of the treatment regimen. When interacting with vulnerable patients, adequate communication is especially challenging because low health literacy, language barriers, and low levels of education can hinder patients’ full and accurate understanding of what they must do to care for themselves. Health professionals need to identify any specific barriers to communication and attempt to build patient trust in the therapeutic relationship, promote shared decision making, listen to patients, and allow patients to offer essential information on how they plan to follow through with their medical recommendations (see Chapter 18)(Figure 20-1).

Motivation

The motivation component of the model highlights the notion that patients will only follow treatments that they believe in and are motivated to pursue. Therefore, a major goal of health care providers should be to work with each patient to develop a treatment plan to which the patient can be fully committed. Health care providers should keep in mind that patients’ beliefs about the value of a treatment (such as about the risks, benefits, and efficacy of treatment) and their sense of confidence that barriers to adherence can be overcome are crucial to influencing their motivation to adhere. In addition, patients’ beliefs in the consequences of nonadherence are important; if nonadherence is perceived as likely to produce problematic health outcomes, patient adherence will be higher than if consequences are not believed or fully understood. Cultural factors, including social group norms, may also impact adherence; providers need to be aware of and sensitive to their patients’ cultural beliefs and practices so that treatment recommendations do not conflict with cultural norms. Furthermore, it is important to note that motivation to adhere may be especially compromised in disadvantaged patients who experience cultural barriers between them and their physicians. If patients and their physicians are not of a similar cultural background, for example, physicians should learn about their patient’s culture to find the best way to help motivate them to adhere; providers should be careful to avoid introducing cultural impediments to adherence (see Chapter 15). Lastly, patients often desire to participate in the process of caring for their health; thus, it is beneficial to promote shared decision making between physicians and patients within the context of a strong therapeutic relationship. Doing so would allow providers to openly discuss patients’ beliefs, concerns, confusions, and apprehensions about treatment regimens.

Strategy

Finally, the strategy component of the model underscores the fact that patients must be capable of adhering and have the resources necessary to follow the prescribed treatment. Patients need the tools and strategies necessary for effectively following their treatment, as well as the capacity to overcome any barriers to adherence that may arise. Thus, another important task for health care providers is to help patients identify and surpass obstacles to adherence. The concrete barriers patients face might include the financial cost of a medication, difficulties in remembering the medication schedule or in dealing with the treatment complexity, coping with unpleasant side effects, and the challenge of accommodating changes in lifestyle such as diet and exercise. Social support from family and friends is instrumental in helping patients adhere to treatments. In this context, social support is useful in terms of the assistance that individuals who are close to a patient can provide. A patient’s relative, for example, can help overcome barriers to adherence by providing transportation, helping with medication affordability, offering child care to attend medical appointments, and reminding the patient to take medications. Past research has found that family cohesiveness can positively influence patient adherence, and that family conflict can threaten it severely. Providers should know their patients well enough to evaluate whether and how the people who are close to a patient can assist in promoting adherence; providers should also help their patients identify other formal systems of aid, including workplace-based interventions and community-based resources. Obtaining aid is particularly valuable for patients of low socioeconomic status. Disadvantaged patients may need help from their health care providers in building a social support network (if, e.g., they are recent immigrants) and with acquiring financial resources for covering the cost of medical care expenses (such as the costs of medications and medical devices if no insurance coverage is available).

Understanding how the three components of the IMS Model can be applied to promote patient adherence may be facilitated by the use of a case illustration.

Stage One: Achieving Patient Understanding of Treatment

One of the primary reasons for nonadherence is that patients do not understand what they are supposed to do when a physician provides them with a treatment regimen. Lucy speaks Spanish fluently but is limited in her understanding of English and in her ability to speak it. Medical terminology and treatment descriptions are difficult to understand, even in her native language (i.e., she has low health literacy). Dr. Ruiz tries to speak to Lucy in terms that she can grasp, and employs a communication feedback loop (or teach-back method). She carefully explains to Lucy what having diabetes and hypertension means for her health and the importance of taking her medications, eating healthy foods, and exercising regularly. Subsequently, Dr. Ruiz can ask Lucy to state in her own words what she has understood. Then, Dr. Ruiz can try to make clear anything that Lucy has not comprehended. This process may continue until Lucy has achieved an adequate level of understanding. These techniques can be used with a medical translator as well. Good communication can help compensate for factors that inhibit proper patient understanding of medical information and can increase the likelihood that a patient adheres to treatment. Furthermore, patients who, like Lucy, tend to be disadvantaged feel empowered by understanding the medical dialogue and would be more capable of making decisions jointly with their physician and implementing their treatment regimen.

Stage Two: Motivating Patients to Adhere

A second reason why patients may not adhere to their treatment is that they may lack the motivation to do so. If Lucy did not understand the information provided by Dr. Ruiz (if stage one of the IMS Model is not effectively employed), she would likely not believe that untreated diabetes and hypertension are serious threats to her health. She may also not believe that she must take her medications and change her diet and physical activity level to remain healthy. Dr. Ruiz would need to motivate Lucy to adhere by helping her accept the seriousness of her conditions and recognize the efficacy of treatment. She can do so by prompting Lucy to discuss her beliefs and any negative attitudes that she may have about her treatment. Once Lucy believes that the benefits of adhering outweigh her concerns, Dr. Ruiz can work with Lucy to state a firm commitment to focus her efforts on adhering to the treatment, and Dr. Ruiz can provide encouragement to build Lucy’s sense of her own capability and efficacy in caring for herself.

Stage Three: Creating a Feasible Strategy for Attaining Patient Adherence

A third key obstacle for achieving patient adherence is that patients sometimes lack a workable strategy for following their prescribed treatments. Lucy is preoccupied with worrying about her husband’s illness and needs. She does not know how she will incorporate into a manageable daily routine the many tasks—including taking her medications on schedule, checking her blood sugar level before and after each meal, buying fresh vegetables, and cooking healthy meals instead of those that are typical for her Hispanic culture. She worries that she cannot go out for walks, tend to her housekeeping, and care for her husband. In addition, she has a very limited financial budget and is not sure that she can afford three expensive elements of her treatment: the device for checking her blood sugar level, her medications, and healthy food options. Lucy is also uncertain about her ability to remember to test her blood sugar throughout the day and to take the correct medication at the accurate time.

Dr. Ruiz can try to help Lucy address all of her concerns by first assessing all of the resources that are available to Lucy. Upon asking Lucy about close relatives, Dr. Ruiz would learn that Lucy has two adult children who live fairly nearby. She could then ask about Lucy’s willingness to ask her children for assistance with bringing her groceries or helping her care for her husband, and Dr. Ruiz would realize that Lucy can potentially obtain considerable social support from her children. With regard to taking her medications, Dr. Ruiz, or her nurse, could write out a simple schedule in Spanish for when to take which medications, and Lucy could place it on her refrigerator. Dr. Ruiz could also suggest that Lucy keep the device for measuring her blood sugar levels in the kitchen where she typically eats her meals. Moreover, she could inform Lucy of financial assistance programs or discount programs where she can sign up to obtain medications and medical equipment at either no cost or at reduced prices. Dr. Ruiz or members of her team could also provide Lucy with ideas for how to adjust her current cooking style to one that slowly introduces healthier options to her traditional cuisine. Lastly, Dr. Ruiz or the team could assist Lucy with finding the best times throughout the week when she can go out for a walk and achieve the goal of increased physical activity. A general summary of the suggested care for vulnerable patients using the IMS Model is provided in Table 20-1.

The IMS Model asserts that patient knowledge, belief in and commitment to a treatment, and capability to adhere are essential for maximizing adherence. Nonadherence is a multifaceted problem and addressing it requires the involvement of health care providers, patients, and the other individuals who are a part of a patient’s social support network. The implementation of the three components of the IMS Model can have a positive influence on the process of care for all patients, particularly those who are most vulnerable, and can improve the physician–patient relationship, communication quality, and favorable health outcomes.

Supported by a Robert Wood Johnson Foundation Investigator Award in Health Policy Research (PI: M. Robin DiMatteo) and by the Committee on Research of the U.C. Riverside Academic Senate.