Introduction
Chronic conditions are the leading causes of illness, disability, and death in the United States today. In 2014, 60% of U. S. adults had at least one chronic disease, and 42% had more than one chronic condition. Diabetes alone affects more than 29 million people in the United States. Recent evidence suggests that the prevalence of chronic diseases and their mortality and morbidity rates have increased in the past 5 years. This increase is particularly significant among adults aged 65 and older. Almost 50 million Americans are disabled by a chronic condition. By 2030, this number is expected to grow to 171 million people. In addition to the personal burden of disease, the costs to the U.S. health care system are staggering. National health expenditures in 2017 were 17.9% of the U.S. gross domestic product ($3.5 trillion). It is projected that by 2027, health care spending will rise to 19.4% of the U.S. gross domestic product.
Although chronic illnesses affect individuals of all ages, they are most prevalent in older people. The most recent U.S. census reported over 40 million people aged 65 and older in the United States. This population is expected to double by 2060, representing more than 20% of the U.S. population. The average person in this age range has two or more chronic conditions, many of which are associated with physical or mental disability. A threefold or greater increase in the disabled elderly population is predicted by the year 2050. The burden of chronic illness also falls disproportionately on poor individuals, educationally disadvantaged people, and ethnic minorities. Several reports document a substantially higher prevalence of health-risk factors (e.g., obesity, cigarette smoking) and selected chronic conditions (diabetes, cardiovascular disease, hypertension, hyperlipidemia) among ethnic minorities in the United States compared with national estimates. Additionally, age and socioeconomic stress factors interact synergistically to increase risk. These figures highlight an urgent need to redesign our health care system and adapt new models of care that will ensure better access and high-quality, affordable, coordinated care for chronic diseases.
A need for coordinated, patient-centered care
Despite recent changes in health care policies such as the Affordable Care Act, the U.S. health care system remains fragmented and poorly organized to meet the challenges of chronic illness care. Care is not patient centered, and it often leaves patients feeling incapable of meeting the day-to-day challenges of living with a chronic condition. In fact, “over 50% of people with chronic illness do not receive modern, evidence-based care.” As described in the 2001 Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, the “current health care system cannot do the job” and “merely making incremental improvements in current systems of care will not suffice.”
Beginning in the mid-1990s, a number of organizations around the country started addressing these challenges. The MacColl Institute of Healthcare Improvement, under the direction of Ed Wagner, MD, MPH, developed a new systematic model for chronic illness care. This model has been introduced and evaluated in a variety of clinical settings nationwide. Data suggest that a more systematic, proactive, patient-centered, and evidence-based approach to care keeps patients with chronic illnesses healthier for longer periods of time. In the Chronic Care Model (CCM), the health needs of patients are met effectively and in a timely manner. In this model, care delivery can be safe, equitable, and efficient for both patients and providers, and morbidity and mortality related to chronic illnesses can be reduced.
Another major development in the coordination of care has been the implementation of the patient-centered medical home (PCMH) concept. The PCMH is a health care model in which a team of health professionals work collaboratively to provide high levels of care coordination and integration as well as quality and safety on an ongoing basis. , In the PCMH, health care is coordinated across all elements of the broader health care system. Coordination of care is associated with reduced emergency department visits, hospitalizations, and readmissions for patients with complex care needs, such as older adults. , To date, approximately 13,000 practices have transformed into the PCMH model.
Patient-clinician partnerships and team-based care: A paradigm shift in chronic disease management
Chronic disease management requires a patient–clinician partnership and a team-based approach. The patient–clinician partnership requires collaborative care, self-management education, self-efficacy support, and effective communication. In team-based care, patients are active members of the teams that manage their chronic illness. Patients should be part of the decision-making process, they should be able to communicate their preferences and choices, and they should have easy access to their clinics and providers. To improve outcomes and patient satisfaction, clinicians should provide effective self-management support and improved communication among all members of the health care team. This requires innovative solutions, such as coordinating care through health information technology, evidence-based practice, a population-wide approach, and continuous quality improvement initiatives.
The CCM identifies six essential elements needed to improve chronic care within the community and health system. Community factors include resources and policies; health system factors include health care organizations, patient self-management support, delivery system design, decision support tools, and clinical information systems. The goal of the model is to promote “effective change in provider groups to support evidence-based clinical and quality improvement across a wide variety of health care settings.” This goal is accomplished through “productive interactions” between a “prepared, proactive practice team” and an “informed, activated patient,” which in turn will lead to improved health outcomes. The CCM was developed to promote integrated change with components directed at:
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Influencing provider behavior
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Better use of nonphysician team members
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Enhancement of information systems
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Planned encounters (interactions linked through time to achieve specific goals)
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Patient self-management
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Modern self-management support
The CCM incorporates additional themes within the context of the model’s elements: (1) patient safety (Health System), (2) cultural competency (Delivery System), (3) care coordination (Health System and Clinical Information Systems), (4) community policies (Community Resources and Policies), and (5) case management (Delivery System Design). Figure 12.1 illustrates the relational concepts of the Chronic Care and PCMH models.
Elements of the chronic care model
The community creates the context in which health care is delivered. Community programs can support or expand a health system’s ability to care for chronically ill patients. The health care system can enhance care for its patients by forming partnerships to support and develop interventions that fill gaps in needed services and by avoiding the duplication of effort.
Health systems can create an organizational culture and mechanisms that promote safe, high-quality care. Ideally, this culture: “1) visibly supports improvement at all levels of the organization, beginning with the senior leader; 2) promotes effective improvement strategies aimed at comprehensive system change; 3) encourages open and systematic handling of errors and quality problems to improve care; 4) provides incentives based on quality of care (e.g., pay-for-performance, provider incentives); and 5) develops agreements that facilitate care coordination within and across organizations.”
All people make decisions and engage in behaviors that affect their health, and this is no less true for people with chronic illnesses. These behaviors constitute self-management. The outcomes of chronic illness depend largely on the self-management decisions patients make. Effective self-management support prepares patients and their caregivers to manage their health and health care by (1) emphasizing patients’ central roles in managing their health; (2) using strategies that include assessment, goal setting, planning, problem solving, and follow-up; and (3) organizing resources to provide sustainable self-management support.
Improving the health of people with chronic illness requires the creation of a system that is proactive and focused on the promotion of health. This objective is accomplished through the design of delivery systems that ensure effective clinical care and self-management support. This design increases the use of nonphysician team members by defining roles and distributing tasks based on the efficient use of team members’ skills. In a proactive delivery system, there are planned interactions that support evidence-based care. Approaches to these interactions may include (1) longer visits (not necessarily more frequent), (2) an agenda, (3) regular follow-up by the team, and 4) clinical case management services for patients with complex needs. Health literacy and cultural competency are two important concepts in health care. Effective delivery system design includes the ability to respond effectively to the diverse cultural and linguistic needs of patients.
Decision support is essential to the delivery of high-quality, evidence-based care that incorporates patient preferences. In a delivery system with effective decision support, evidence-based guidelines are embedded into daily clinical practice through reminders, feedback, standing orders, and other methods that increase their visibility at the time that clinical decisions are made. Furthermore, these guidelines and information are shared with patients to encourage their participation. For more complex patient care, specialist expertise is integrated into the delivery of primary care.
Effective chronic illness care requires information systems that ensure access to vital data on both individual patients and patient populations. Clinical information systems may be electronic or paper based and are used to organize patient and population data to facilitate care. At the individual level, information systems provide reminders to patients and providers and facilitate individual care planning. At the population level, information systems identify related subpopulations for targeted care and aid in monitoring the performances of providers, the practice team, and the care system.
These six elements combined support productive interactions that are the core of chronic disease management. Note that “interaction” is used deliberately to move away from the idea that all encounters are clinical visits. Phone calls, emails, self-management classes, and support groups are all examples of strategies demonstrated to be effective in improving patient–clinician communication. Half of productive interaction is having a prepared, proactive practice team. To have productive interactions, we need a different kind of team. Also, effective care coordination within health care teams and across facilities and community resources means rethinking the players on the team, their roles, and using all members to full capacity. In addition to the PA, physician, or nurse practitioner, new team members can be added or the roles of existing team members can be expanded. For example, with enhanced training, medical assistants can help with previsit planning, reconcile medications, participate in quality improvement projects, and provide health coaching for patients. Registered nurses (RNs) are ideally suited for direct patient care and leadership roles in PCMHs, based on their education in patient care and family and systems theory. Data show that use of RNs in team-based primary care to provide episodic and preventive care and chronic disease management and to oversee clinical operations such as staff supervision and quality improvement resulted in improved patient outcomes, more productivity, and reduced cost. Seventy-one percent of physician visits involve medication management, including evaluation of therapeutic efficacy, adverse drug events, and potential drug interactions. Studies have demonstrated a correlation between the risk of adverse drug events and nonadherence and the complexity of the medication regimen. , This is an opportunity to use the untapped potential of clinical pharmacists to optimize complex therapeutic regimens. Clinical pharmacists perform comprehensive therapy reviews, resolve problems with medications, support adherence and self-management, and recommend economical therapeutic alternatives. In addition to having the right mix of health care professionals, the team must have decision support tools, clinical information systems available at the point of service, and the resources necessary to deliver high-quality care. A crucial member of team-based care, and the other half of the productive interaction, is an informed, activated patient (and caregiver). An informed, activated patient has the knowledge, skills, confidence, and motivation to self-manage care. This requires more than the traditional patient teaching and will be discussed later in this chapter. There is evidence that, with appropriate self-management support, almost any patient can become a relatively effective self-manager. Productive interactions are recognizable by the presence of (1) assessment of self-management skills and confidence as well as clinical status; (2) collaborative definition of problems; (3) collaborative setting of goals and problem solving; (4) the development of a shared care plan; (5) the tailoring of clinical management by stepped protocols and guidelines; and (6) planned, active, and sustained follow-up.
Self-management and self-management support
Self-management and self-management support are at the core of the clinician–patient encounter. All patients manage their day-to-day lives and health, whether they do it effectively or otherwise. In the context of chronic illness, self-management becomes particularly important. Research regarding the effectiveness of patient education tells us that providing information alone is not enough. That is, providing information in the absence of self-management support does not change health outcomes. , , This has been described by Bodenheimer , as the “50% rule”; half of patients are unable to repeat back what they are told by a physician, half do not understand how to take their medications and take them incorrectly, and half of patients leave a clinical visit without understanding what the physician said. The lifelong work of patients managing chronic illness encompasses three sets of tasks. The first set entails medical management of the illness, such as diet, medications, regular follow-up, and laboratory tests. The second set includes adaptation of life roles and behaviors, such as modification of work or recreational activities to fit functional capacity. Finally, the third set involves coping with the emotional aspects of chronic illness, which can include depression, anger, and fear. Self-management programs, therefore, must include all three sets of tasks required to effectively manage chronic illness.
The components of effective self-management support are (1) providing information; (2) offering intensive, disease-specific skills training; (3) encouraging healthy behavior change; (4) teaching patients both action-planning and problem-solving skills; (5) assisting patients with the emotional aspects of having a chronic illness; (6) encouraging patients to become “informed and activated”; and (7) providing ongoing and regular follow-up. Current evidence demonstrates that follow-up has the greatest impact on health outcomes and that follow-up need not be a clinic encounter. Strategies such as web-based programs, email, telephone calls, and peer support are all effective. , A meta-analysis of 31 randomized controlled trials (RCTs) testing the effect of self-management education on hemoglobin A 1C in adults with type 2 diabetes demonstrated that the effect of education wanes after 3 months and that sustained follow-up closely correlated with improved glycemic control. , , A meta-analysis of eight RCTs testing the effect of changing provider–patient interactions and provider counseling style on patient diabetes self-care and diabetes outcomes showed that interventions aimed at improving patient self-efficacy were more successful in improving outcomes than interventions aimed at provider behavior.
Motivational interviewing and action planning
Miller and Rollnick define motivational interviewing as “a directive client-centered counseling approach for initiating behavior change by helping clients to resolve ambivalence.” It is beyond the scope of this chapter to instruct the reader in all the aspects of motivational interviewing. For further information, readers are referred to Motivational Interviewing: Preparing People for Change, 2nd ed. (p. 325). Motivational interviewing is a philosophy in which a blend of patient-centered and coaching strategies, combined with understanding of what triggers behavior change, is used to guide clinician–patient interactions. The key principles of motivational interviewing are summarized in Box 12.1 . Two key concepts of motivational interviewing are addressing ambivalence and recognizing resistance as a cue to the need for changing clinician behavior. Ambivalence can be defined as a conflict between two courses of action, each of which has potential advantages and disadvantages. Ambivalence may derive from (1) not knowing what to change, (2) not knowing how to change, (3) not believing a change needs to occur, (4) not understanding why a change needs to occur, or (5) doubt in the ability to be successful in making the change. Resistance occurs because the person is unwilling to make the change or perceives the costs associated with the change (e.g., giving up smoking) as outweighing the benefits (e.g., possibly avoiding future lung disease). The principles of motivational interviewing are best described as an interpersonal style that can be used in a variety of therapeutic encounters, rather than a prescribed set of techniques. Table 12.1 compares clinician behaviors that facilitate motivational interviewing with those that impede the process. Physician assistants (PAs) are in an excellent position to identify patients at risk for poor health outcomes and to use the patient-centered communication method of motivational interviewing to actively engage them in a successful behavior change process. The role is not to tell patients what to do but to listen, provide empathy, alleviate ambivalence, provide information, and serve as a change agent. Motivational interviewing strategies provide a framework for this effort, as demonstrated in Case Study 12.1 . Respect of autonomy and self-determination and support of self-efficacy are key elements that contribute to success.
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Express empathy.
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Reflective listening is used to understand the patient’s feelings without judging. Accurate empathy is acceptance of the patient’s perspective as valid within his or her framework. It is not agreement or approval.
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Acceptance facilitates change.
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Ambivalence is normal.
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Develop discrepancy.
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Develop and magnify, from the patient’s point of view, the discrepancy between the behavior and their long-term or larger goals.
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The goal is to aid the patient in moving past ambivalence toward change.
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The patient, not the health care provider, should present arguments for change.
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Roll with resistance.
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Resistance is a signal to respond differently; resume asking questions rather than offering answers.
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The patient, not the provider, generates solutions.
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An analogy is to “dance with” rather than “wrestle with” the patient.
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Be respectful of autonomy.
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Avoid arguing for change by not directly challenging resistance.
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Support self-efficacy.
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The patient’s belief that change is possible is an important motivator.
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The patient, not the provider, chooses and brings about the change.
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Self-efficacy (confidence) is a good predictor of outcomes.
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| Clinician Behaviors That Facilitate Motivational Interviewing | Clinician Behaviors That Impede Motivational Interviewing |
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S.S. is a 50-year-old Vietnamese man with a recent diagnosis of chronic obstructive pulmonary disease (COPD). He has a 36-pack a year history of cigarette smoking. He works as a computer programmer. He has been happily married for 27 years, with three children, ages 25, 22, and 14 years. The youngest child lives at home; the older two live nearby. He has lived in the United States since the age of 15. He has a large extended family also living in the area. Family history is significant for gastric cancer in his mother and early death from lung disease in his father. Both of his parents smoked. S.S. is here today for a planned visit to follow up on his COPD. He also has a chief complaint of a productive cough. As his primary care PA, your role is to provide information and support for health behavior change related to his lung disease and smoking.
Expressing empathy
Empathy expression is accomplished by being nonjudgmental, having a genuine concern for the patient’s well-being, and allowing him to set the agenda while you ask necessary questions. You can begin to raise awareness about COPD by asking him about the symptoms he is having, his tobacco use, and his previous attempts to quit smoking. Encouraging the patient to talk is respectful and builds autonomy. Asking open-ended questions facilitates information gathering and explores his feelings. Reflective listening demonstrates to him that what is said is actually being heard. As the conversation continues, the goal is to develop discrepancy. Mr. S. stated he knew that his smoking was making his cough worse, and he is concerned that he will die early, as did his father, and “miss knowing my grandchildren.” He has tried to quit twice before, but “just couldn’t do it.” Cigarettes help him relax when his work pressures “build up.” Empathy is the objective identification with the affective state of another, not his or her experience. Empathy is the primary interpersonal skill for expressing caring and understanding. For example, Mr. S. wishes to quit smoking but enjoys the relaxation he gets from smoking. We do not have to smoke ourselves to understand these conflicting desires. An empathic response would be, “It would be difficult to quit smoking when it helps you relieve stress.” Strategies such as affirming and elaborating further explore and reinforce self-efficacy.
Developing discrepancy
Developing discrepancy is a means of creating cognitive dissonance, the psychological discomfort that arises from holding two conflicting thoughts in the mind at the same time. Cognitive dissonance is a powerful motivator of change. Discrepancy may be developed by asking the patient to list the benefits versus the costs of the behavior or behavioral change he or she is contemplating and then reflecting on the pros and cons while highlighting inconsistencies. Asking the patient to elaborate on discrepancies between stated goals and present behaviors that contradict those goals is a powerful means of developing discrepancy and motivating change. For example, Mr. S. continues to smoke. You state, “Mr. S., I see that you continue to smoke. What are your thoughts about how this affects your goal to live long enough to know your grandchildren?” The question is nonjudgmental and draws on Mr. S.’s own conclusions. Although it creates dissonance, it does not present an argument for change. The question is designed to facilitate the patient’s “change talk” or arguments for change based on examining his risks, recognizing them, and foreseeing potential consequences.
Avoiding argument
Avoiding argument means not eliciting resistance by forcing patients to defend the behaviors they are trying to change. By avoiding arguments, it is more likely that patients will see you as an ally. For example, Mr. S. states, “I’ve tried quitting smoking before and couldn’t do it. There’s no point in trying again.” Resistance is a cue to change your approach; use open-ended questions to get the patient talking. Rather than tell him many patients have to try more than once, you state, “It sounds as if you’re frustrated by your previous attempts to quit smoking. What problems did you have?” This response is empathetic, addresses the patient’s emotional state, and asks for additional input.
Rolling with resistance
Rolling with resistance means going with what the patient is willing to do. This sometimes means doing nothing at the time. For example, Mr. S. states, “I’m okay. My breathing isn’t nearly as bad as my father’s was.” Rather than arguing with this statement by responding, “If you continue smoking, you will probably get worse,” you can roll with the resistance by saying, “I hope that your health continues to stay good. However, keep getting regular check-ups because that may change. I’m here to help if you wish to quit smoking as time goes on.” In this way, you have both followed the direction set by the patient and created a discrepancy. You have not scolded him and have left the door open for future conversations.
Supporting self-efficacy
Self-efficacy is a patient’s confidence that he or she can make life changes. Self-efficacy is an important motivator for behavior change, and supporting self-efficacy is a key skill of motivational interviewing. Look for opportunities to praise the efforts patients make toward positive behavior change. For example, Mr. S. comes in for a planned visit and tells you, “I’ve cut down on my smoking.” A supportive response would be, “That’s an important step to improve your health; tell me more about how you did it.” Such a response congratulates and reinforces the positive change the patient has made and facilitates the discussion of any difficulties he is encountering. In this conversation, he has accepted the fact that the behavior change might decrease his risk for early death and disability. As Mr. S. continues to direct the conversation, he begins to believe he can continue cutting down on his smoking and develops ideas for other ways to reduce his stress. This is the time to actively engage him in action planning. In the end, Mr. S. elicited his own arguments for change and set goals for action.
The goal of motivational interviewing is to elicit “change talk” and thus facilitate goal setting. Action planning is a proven strategy for building self-efficacy while working toward goals. The “5 A’s”—assess, advise, agree, assist, and arrange—adapted from the Agency for Healthcare Quality Research (AHQR) clinical practice guidelines, , , are a patient-centered model of behavioral counseling that are congruent with the CCM. The 5 A’s have been frequently used to enhance self-management support and linkages to community resources. Box 12.2 outlines the 5 A’s. Readiness scales measure two concepts: (1) How important is the change to the patient? and (2) How confident is the patient that he or she can do what is needed? Importance and confidence levels of 7 or higher correlate to a higher probability of success. See Figures 12.2 and 12.3 for examples of these scales. The 5 A’s and readiness scales are a quick and effective way to elicit discussions on change and determine what else needs to happen for the patient to make an even greater commitment to change. Case Study 12.2 illustrates the use of readiness scales.
| Assess | Patients’ beliefs, behavior, and knowledge. |
| Advise | Patients by providing specific information about health risks and benefits of change. |
| Agree | On a collaboratively set of goals based on patients’ confidence in their ability to change the behavior. |
| Assist | Patients with problem-solving by identifying personal barriers, strategies, and social and environmental support. |
| Arrange | A specific follow-up plan. |
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Decide what you want to accomplish.
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These are the long-term goals—they will be broken into “do-able” chunks later.
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Make a list of goals; put a star next to the one you wish to work on first.
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Look for alternative ways to accomplish this goal. Think about barriers you might encounter, and include ideas for overcoming them.
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List the options you might use to reach the goal. Ask family and friends for ideas if you are having difficulty with this.
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Thoroughly explore each option before discarding it as unworkable.
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Start making short-term plans by making an action plan or agreement with yourself.
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This is the action plan and should be a specific, measurable behavior or set of behaviors that can be accomplished in 1 week and will help you move toward your goal.
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Decide what you will do this week. The plan should contain four parts:
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Exactly what will you do?
Start where you are or start slowly. For example, “I will walk up and down the sidewalk in front of my house.”
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How much will you do?
Be specific. Continuing the above example, “for 5 minutes.”
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When will you do it?
Connecting the new activity to a favorite old one is a good way to make sure you do it. Continuing the above example, “before watching the evening news.”
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How often will you do it?
Setting a goal that is less than your ideal (e.g., three to four times per week) rather than daily decreases the pressure to perform. It also gives you some time off. Continuing the above example, “three times a week.”
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Assess your confidence level on a scale of 0 to 10. If your confidence that you can accomplish the plan is less than 7, consider modifying the plan.
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Carry out your action plans.
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This is usually the easy part if the action plan is well written and realistic.
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Keep track of your progress by noting your activities, both when the activity was accomplished and when it was not. This record is used in the next step.
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In the example, this might include making a log for recording activity or noting on the calendar both the days you walked and the days you did not. Be sure to note the factors that helped you accomplish your activity or that prevented you from doing it.
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Check the results against the plan.
At the end of the week, review the action plan. Did you complete it? Are you further along toward your goal?
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Make changes as needed.
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This is the problem-solving step. If you did not accomplish all the parts of your action plan, do not give up.
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Identify the barriers that prevented you from achieving the steps.
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List possible remedies to the problem (much as you did in step 2). Then pick one to try.
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Repeat steps 3 to 6, modifying your action plan so that the steps are easier to achieve.
Note that not all problems are solvable. If several honest attempts to work out a problem are not successful, it may be advisable to move on to another goal at present.
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Remember to reward yourself.
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Accomplishing your goals is a reward and builds confidence (self-efficacy), but do not wait until you reach your goal to reward yourself!
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Rewards do not have to be expensive or elaborate. Think about healthy pleasures you can add to your life.
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