Living in the real world: reasons why adherence is not perfect



by R. I. G. Holt , United Kingdom

Richard I. G. HOLT, PhD, FRCP
Human Development and Health
Academic Unit, Faculty of Medicine
University of Southampton
UNITED KINGDOM




Living with a chronic medical condition places significant behavioral and treatment demands on the individual. Nonadherence to medication and lifestyle self-management plans is a major challenge in chronic condition management, as it is both common and associated with poor clinical outcomes. Human behavior is extraordinarily complex, and different reasons for nonadherence will apply to each individual and their different circumstances. In this article, I will review the barriers—personal, medication-related, and health-care professional–related—that explain why adherence is imperfect in the real world. Although lack of self-management education is an important reason for nonadherence, insufficient knowledge does not entirely explain the situation. Behavior is also critically dependent on motivation, which, in turn, is affected by health beliefs, self-efficacy, disease perception, and mental wellbeing. In situations where the person with the chronic condition is empowered to take responsibility for their self-management, adherence improves. Coping strategies and problem-solving skills influence the individual’s response to their condition and subsequent self-management. People with chronic conditions do not live in isolation and the support they receive from their friends and family, as well as the health care team, affects adherence. With regards to pharmacotherapy, side effects of treatment and therapeutic complexity reduce medication adherence. Understanding the multiple reasons for nonadherence should provide the basis for the design of interventions to improve support for individuals with chronic medical conditions.

“Drugs don’t work in people who don’t take them.”
Dr C. Everett Koop, the 13th US Surgeon General,
who served under President Ronald Reagan from 1982 to 1989

Medication nonadherence is a major challenge in chronic condition management and increasing the effectiveness of adherence interventions may have a greater impact on population health than any improvement in specific medical treatments. Fewer than 50% of people receiving oral antidiabetes treatments, antihypertensive agents, and statins persist with their medication 2 years after treatment initiation and up to 20% never start treatment.1 Nonadherence to diabetes medication is associated with poorer glycemic control and significantly higher rates of hospitalization and mortality.2 Self-management extends beyond medication to a range of other behaviors, including diet, physical activity, smoking cessation, and self-monitoring of, for example, glucose. In the second Diabetes Attitudes Wishes and Needs (DAWN2) study, people with diabetes self-reported taking medication on average 6 days a week while following a healthy diet plan 5 days a week, but only exercising and checking glucose 3-4 days a week.3 Health care professionals often become frustrated when management plans go awry and patients appear to ignore sensible (in their eyes) advice. In reality, very few of us consistently pursue an ideal lifestyle, and a greater understanding of why people living with a chronic condition do not follow an agreed management plan will help support these individuals to achieve their health goals.

Human behavior is extraordinarily complex, and it is far too simple to suggest that the same reasons for poor self-management of chronic medical conditions apply to every person and circumstance (Table I). In order to illustrate this, consider driving a car over the speed limit. Most people accept the need for speed limits to promote road safety, yet most drivers have broken the speed limit at some time. The reasons inevitably vary between drivers and at different times, but may include:
• not knowing the speed limit
• thinking that accidents will not happen to them
• enjoying the thrill of speeding
• feeling that everyone else is doing it
• not caring
• being distracted by other things, such as work, the phone, or children in the back seat
• being in a rush.

Recognizing ourselves in these behaviors can help us empathize with our patients; if we consider these reasons further, it becomes apparent that many have parallels in health care adherence. For example, “not knowing the speed limit” might reflect a lack of education, which also applies in a health care setting, eg, newly diagnosed patients. “Thinking that accidents will not happen to them,” which equates to an individual’s assessment of personal risk, might translate into a false perception of the risk of long-term complications.

When I was a student, one professor described three types of diseases: “those that you know you have, those that others know you have, and those that your doctor tells you that you have,” each of which evokes a markedly different behavioral response. Consider how pain in the right iliac fossa, nausea, and malaise will drive a person with appendicitis—an example of the first type of disease—to seek help. The lack of memory and self-care that characterizes Alzheimer’s disease might lead family members to seek medical help for their relative— an example of the second type of disease. The last group of diseases is the most challenging and includes many cardio-metabolic conditions, such as hypertension, hyperlipidemia, and diabetes. With these conditions, the patient often has no symptoms and yet may be “given” a diagnosis and management plan, for which there is no immediate benefit or incentive to change behavior. Most people living with a chronic condition spend no more than 6-8 hours a year with a health care professional, leaving them to manage the condition for the remaining 8752 hours themselves. There are no holidays from this constant demand and so perhaps we ought to be more surprised that people with diabetes are taking their medication on average 6 days a week and eating healthily for 5 days a week!3

This review will explore further the challenges facing people with long-term cardiometabolic conditions, with a focus on diabetes. This analysis is informed by my clinical practice, a long-standing academic interest in the psychosocial aspects of diabetes, and a review of the literature that focused on recent articles on adherence in chronic conditions.

Table I. Personal, medication-related, and health-care professional–
related barriers to optimal self-management of chronic medical
conditions.

Knowledge, understanding, and education

Understanding a chronic condition and its management is a necessary prerequisite to self-management.4 In the case of diabetes, both literacy and numeracy skills are needed to translate health care–related information, such as food labels, into decision-making and self-management, for example, appropriate insulin administration.4,5 Self-management education has been defined as “an ongoing process of facilitating the knowledge, skill, and ability necessary for self-management behaviors,” with educational activity being based on the needs, goals, and life experiences of the person with the chronic condition.6 Many people and their family members find educational courses valuable and enjoy learning more about their condition. Despite their importance, however, few people have had the opportunity for education; in the DAWN2 study, only 49% of people with diabetes and 23% of their family members reported ever participating in a diabetes education program.3,7

Self-management education of older people and their family members is often deficient, leading to serious gaps in diabetes knowledge.8 This is particularly challenging for a group of individuals who have an increased risk of cognitive decline and dementia and consequent memory problems.

Recently, the UK National Health Service introduced a financial incentive for general practitioners to refer to structured diabetes education programs. This led to an increase in referrals, but uptake remained unchanged,9 leading to questions about whether these programs address patient needs and are provided at suitable times and locations. The poor uptake may also reflect how health care professionals communicate the role of the education; for example, if health care professionals view this as an optional extra, patients will be less likely to attend than if it is seen as an integral part of treatment. The best measure of successful education is not simply that the person knows more, but instead that they use the new knowledge to enhance their self-management.

While necessary, education alone is insufficient to change behavior substantially and we need to explore how motivation interacts with knowledge and skills.

Motivation

Motivation can be seen as a reason for acting or behaving in a particular way and reflects an individual’s identity, self-esteem, and values. It can be divided into external and internal; extrinsic motivation leads to activities that achieve a reward or avoid a threat or punishment, while intrinsic motivation is driven by an interest in or enjoyment of the task itself. In general, intrinsic motivation is more powerful than extrinsic motivation, and short-term rewards are bigger drivers than long-term gains. This perhaps explains why threatening individuals with the long-term complications of the condition is a poor way of changing health behavior. Motivation is often construed in an abstract manner, but a better way of considering this is to understand that people are motivated to do what they value.

Health care professionals often deride individuals with chronic conditions as having little motivation, but this is untrue. Very few people are unmotivated to live a long and healthy life, but often conflict arises between different motivators (Table II). Consider a taxi driver with diabetes; he values earning a living from driving and recognizes that recurrent hypoglycemia may jeopardize his licence to drive. He may be more motivated to avoid hypoglycemia than to achieve good glycemic control to avoid the long-term complications of diabetes. A further example may be a young woman who does not want to inject insulin in front of her friends because she values avoiding the embarrassment that this would cause. If an individual has been told of the health importance of a behavior change and understands this, but still does not do it, it is because they value something else more highly. Exploring this ambivalence is one of the tenets of motivational interviewing.

Patient empowerment has been defined as “the discovery and development of one’s inherent capacity to be responsible for one’s own life.”10 This concept recognizes that knowing about an illness is not the same as knowing the context within which each individual lives with the condition. The theory identifies the person with the condition as best placed to understand how to self-manage and places them in the position of primary decision-maker. In practice, management moves from a rigid prescribed regimen to one where the individual makes informed choices to suit their individual circumstances. Encouraging people with diabetes to take this responsibility improves motivation, leading to improved medication adherence as well as better diet, exercise, glucose testing, and foot self-care.11

There are several theories that attempt to explain motivation and health behavior and I will explore some of these in the next section.

Health beliefs

The health belief model hypothesizes that health-related behavior depends upon three different things happening together12:
• The existence of sufficient motivation or health concern to make health issues relevant
• The belief that an individual is vulnerable to a serious health problem or its complications
• The belief that following a particular health recommendation would be beneficial in reducing the perceived threat at a subjectively acceptable cost.

Table II. Examples of ways in which different personal values can impair diabetes
self-management.

In one study of people with new-onset type 2 diabetes, only 64% believed that this was a lifelong condition, while only 22% believed that the diabetes would affect their health, and 9% thought that diabetes would shorten their lives.13 Given these beliefs, it is understandable why some of these individuals would not dedicate the necessary time and effort to managing their diabetes.

Health beliefs that confuse the effect of the disease and its treatment often adversely influence care. For example, many people are reluctant to initiate insulin therapy because of their experience of a family member who has died or developed a diabetes complication shortly after starting insulin; in their mind, the insulin precipitated the event rather than the poorly controlled diabetes.

Self-efficacy refers to an individual’s belief in their capabilities to organize and execute the courses of action required to produce given attainments.14 Such beliefs relate both to the confidence that the individual has the ability to perform the behavior and the belief that a behavioral change will have a positive outcome. Higher self-efficacy is associated with better self-management and, in the case of diabetes, better glycemic control.4

Illness perceptions

An individual’s perception of their illness can affect their health behavior, particularly when perceptions are specific and focus on issues that are central to the individual’s experience of illness and its management.15 According to Leventhal, health and risk behaviors have a bidirectional interplay, which changes according to symptoms, beliefs, and circumstances. People interpret their condition through personal knowledge and experience, with dynamic illness representations being central to determining self-management behavior.

For example, in one study, people with diabetes rated medication as more important than diet and exercise, and reported higher adherence to drugs than lifestyle interventions.16 However, those who perceived that exercise could help diabetes control were more likely to be physically active. Perceived personal control was also associated with better self-management.

Coping and problem-solving skills

The diagnosis of a chronic condition is a stressful event and how people cope with the problem has a major influence on subsequent self-management. Coping strategies differ according to the nature of the stressor, the individual, and the social environment, some of which are more effective in terms of self-management than others.17 The person may appraise the problem and change the way they think about it, for example, denial or looking for humor in a situation. This approach can self-evidently be maladaptive; while denial of a chronic condition may reduce the stress, it will not promote necessary lifestyle changes or regular medication use.18

Another approach is to manage the emotions that stem from the perception of stress and include escape-avoidance, acceptance of responsibility or blame, exercising self-control, and positive reappraisal. The aim of these strategies is to find a more positive meaning to the situation to reduce the emotional component of the stressor. Emotion-focused coping is well suited for uncontrollable situations, such as the diagnosis of a terminal illness or a bereavement.

The most constructive strategy involves dealing with the cause of the problem, by seeking information about the problem and learning new skills to manage it. The success of a problem focused approach is dependent on the individual’s ability to solve the problems associated with self-management. Good problem-solving ability in people with diabetes is associated with healthier eating patterns, more frequent glucose self-monitoring, and better diabetes self-management.4

Depression and diabetes distress

It is important for clinicians to recognize that psychotic illness, anxiety, and alcohol and drug misuse are all associated with poor self-management and worse outcomes19; however, a detailed description of the interactions between these mental health conditions and adherence is beyond the scope of this review. Instead, I will concentrate on depression and diabetes related distress as exemplars.

The prevalence of depression and depressive symptoms increases in people with chronic illness. Among people with diabetes, ≈10% have a formal diagnosis of depression while up to a quarter exhibit significant depressive symptoms.20 Similarly, 20%-50% of those with cardiovascular disease have depression.21 The comorbidity worsens clinical outcomes, which may be partly explained by the effect of depression on adherence; results from a meta-analysis of 47 independent studies shows that depression, including low levels of depressive symptoms, was associated with reduced adherence, with the greatest effect on missed medical appointments and composite measures of self-care.22

Diabetes-related distress captures the emotional distress associated with living with diabetes and is more common than diagnosed depression.23 Although diabetes-related distress correlates modestly with depressive symptoms, it remains distinct from depression and is a better predictor of self-management behavior and glycemic control.

Social support – “no man is an island”

Living with a chronic condition is influenced by the context in which people live and the social support obtained from family, friends, and health care professionals.24 Social support improves self-efficacy and adherence to diabetes self-management behaviors, by encouraging optimism and self-esteem while buffering the stressful effects of the chronic condition. Conversely, lack of support is an important barrier to active self-management, and studies have shown that living without a partner is associated with poor quality of life, psychological well-being, and glycemic control.25

Poverty is associated with worse adherence, particularly in societies where individuals have to pay for treatment out-of pocket. For example, in one study from the USA, food insecurity— defined as being without reliable access to a sufficient quantity of affordable, nutritious food—was associated with low medication adherence and poorer glycemic control.26 A further example from the USA explored how insurance coverage influences adherence; adherence improved by 13.4%- 17.9% for those with hyperlipidemia, hypertension, or diabetes when prescription costs were subsidized through Medicare Schedule D.27

Poverty is also associated with living in a poor neighborhood. Both physical factors (eg, traffic, noise, and lack of pavements) and social factors (eg, poor social cohesion, violence, and residential instability) reduce the opportunity for a healthy lifestyle and consequently may increase the risk of chronic cardiometabolic disorders.28

Medication

Most people taking cardiometabolic drugs do not feel better yet experience unwanted side effects. Studies have reported different adherence between classes of oral antidiabetes agents that may reflect, in part, differences in adverse events. For example, in one study from Germany, after 2 years only 51% were still taking sulfonylureas compared with 61% for DPP-4 (dipeptidyl peptidase-4) inhibitors.29 Weight gain and hypoglycemia are common unwanted side effects of certain classes of antidiabetes drugs and can lead both physicians and patients to abandon treatments.29,30

Adherence drops as treatment regimens become more complex, both for the condition and for other comorbidities.31 For example, in one community study, the overall rate of adherence over 6 months to oral antidiabetes drugs therapy was 67%, but this ranged from 79% in those receiving once-daily regimens to only 38% in those on thrice-daily regimens.32 Studies have suggested that single-pill combination formulations can improve adherence and treatment satisfaction compared with loose-pill combination therapies. Increasing complexity of treatment is also important for insulin management, as the perceived treatment burden increases with the number of injections and requirement for glucose monitoring.33

Treatment satisfaction

Treatment satisfaction, the belief that the benefits of treatment outweigh the burden, improves treatment adherence and glycemic control.34 Peyrot and Rubin deconstructed the factors associated with treatment satisfaction in a clinical trial of pramlintide and demonstrated that individual-level clinical outcomes— such as hypoglycemia, change in postprandial and long-term glucose levels, and weight—accounted for almost half of the judgments of treatment satisfaction and preference.34 Interestingly, change in glycated hemoglobin (HbA1c) was not associated with treatment satisfaction, suggesting that things that matter to patients are not always the same as those that matter to health care professionals.

Role of the health care professional

People with chronic cardiometabolic conditions are not passive recipients of health care, and optimal management occurs when the multidisciplinary care team and person with the condition work actively together as equal partners. Regular lifelong contact between the patient and health care team is essential in order to support the person through the changing demands of their condition. Facilitating choices based on the best evidence available, and providing the person with the chronic condition with autonomy in consultations leads to better self-care and improved metabolic control.35 In the DAWN2 study, poor coordination between organizations and health care professionals was reported as an impediment to optimal diabetes management.3,36

Given the limited time in contact with health care professionals, it is crucial that the opportunities in the consultation are maximized in a collaborative, patient-centered, and goal-focused manner. Poor communication prevents patients from discussing their concerns, leading to disagreement about the core problem.35 Health care professionals often give conflicting advice, both within the team and from one consultation to the next, and goals are often not pursued, leaving the patient feeling frustrated. Such disagreement and inconsistency are associated with confusion, poorer adherence, and worse outcomes. Clear messages, support, and treatment are particularly needed at diagnosis, when the newly diagnosed individual needs to assimilate a huge amount of information and skills at the very time when they may be least able to do so, perhaps because of denial of or anger with the diagnosis.37

The knowledge, beliefs, and attitudes of health care professionals may also influence self-care management. Several studies have demonstrated that significant delays in treatment intensification in people with type 2 diabetes with suboptimal glycemic control occurred despite opportunities to make changes; as a result, many remained with poor glycemic control for several years before treatment was intensified.38,39 Clinical inertia, which may potentially account for 80% of cardiovascular events,40 occurs for numerous reasons, many of which are related to the health care professional, including overestimation of care provided, use of soft reasons to avoid intensification of therapy, and a lack of training, education, or practice organization.41

Professional beliefs about treatment efficacy, the need for treatment intensification, and concerns about side effects may all be barriers to treatment intensification.42 Other clinician-level barriers stem from concerns over patient adherence, with physicians perceiving their patients as unable or unwilling to adapt to increasingly complex regimens.

Conclusion

Living with a chronic medical condition places significant behavioral demands on the individual. In this article, I have considered the personal, medication-related, and health-care professional– related barriers that explain why adherence is not perfect.

Understanding these should provide the basis for designing interventions to improve support for individuals with chronic medical conditions. ■

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Keywords: adherence; self-management education; motivation; empowerment; self-efficacy; health beliefs