39: Chronic Illness & Patient Self-Management

About 130 million people in the United States live with at least one chronic illness, a number expected to top 150 million by 2020. Over half of that population have multiple chronic conditions. People with chronic illnesses account for 80% of total health care expenditures. By 2023, 48 million people are expected to have diabetes and 47 million will have a chronic mental health ­problem. About one-half of the people with hypertension and two-thirds of those with diabetes are in poor control of their disease, demonstrating that even with proven treatments for most chronic conditions, the health care system is poorly organized to care for these conditions.

Chronic disease is a primary care problem. Of the visits for chronic illness, 83% for hyperlipidemia, 79% for hypertension, 72% for diabetes, 76% for asthma, and 71% for depression are visits to primary care practitioners rather than specialists. The rushed 15-minute visit, which on average needs to address three or more medical issues, is entirely inadequate to care for chronic conditions. Primary care practitioners are constrained by the “tyranny of the urgent,” the need to prioritize acute problems over chronic care management. As the case of Senora Romero reveals, the 15-minute visit constrains the nurse practitioner from helping her patient gain control of her three chronic conditions. To improve the care of chronic disease, primary care needs to be transformed, moving beyond the 15-minute visit and creating new ways to manage chronic illness. A vibrant movement within primary care has taken on this task, hoping to transform primary care practices into “patient-centered medical homes.”

Much of this chapter is devoted to a discussion of the Chronic Care Model (CCM), the guide to improving chronic care management. The end of the chapter describes the innovations taking place in primary care practices to implement the CCM.

The CCM (Figure 39-1) incorporates the community, health care system, health care team, and patients in a unified model designed to improve patient outcomes for those with chronic illness. Developed by Ed ­Wagner in the 1990s, the model describes six components or dimensions of care that are necessary to maximize effective use of resources and coordinate care. The six components are: (1) community resources and policies; (2) the health care organization; (3) self-management support; (4) delivery system design; (5) decision support; and (6) clinical information systems. The last four components exist within the health care organization, generally within a primary care practice. Implementation of this system of care, with linkages to community resources, provides a network of support for a knowledgeable, prepared health care team to work in partnership with patients to manage and control chronic diseases. Since many chronic diseases are directly linked to behaviors (e.g., tobacco use, sedentary lifestyle, and unsafe sexual behaviors), a key component of the CCM is self-management support—assisting patients to gain the knowledge, skills, and confidence to self-manage their disease and/or risk behaviors. Yet, to offer self-management support requires realignment of health care providers into a system of care delivery that uses an integrated team approach.

The Community: Resources & Policies

The health care organization exists within a local community where individuals with chronic illnesses live. An integral component of the CCM is the cultivation and maintenance of relationships with community resources and agencies. Many community organizations provide additional resources and support for individuals with chronic illnesses and their families, such as patient education classes, exercise classes, smoking cessation programs, and home health services. These programs can bridge the service gap between health care organizations and patients and their families. Community agencies also can be partners in setting priorities and achieving goals that enhance the health of the community by advocacy. On a macro level, public policies that promote health care for chronic conditions or encourage primary prevention are also essential in reducing the burden of long-term illness. Examples of these policies include: raising tobacco taxes, the creation of smoke-free environments, banning trans fats in restaurants, and creating bike paths to encourage physical activity.

Health Care Organization

The foundation of the CCM rests on the values and policies that govern health care provider organizations and set the tone for attitudes toward patients with chronic illnesses. If the leadership within the organization supports the importance of chronic care management, innovations are likely to be instituted. Such buy-in and support require commitment to the goal of controlling chronic illness and willingness to fund practice innovations. In addition, reimbursement policies can either facilitate or hinder quality chronic illness care. For example, fee-for-service payment creates the incentive for many 15-minute visits performed by clinicians and fails to pay for longer planned visits with nurses, health educators, or health coaches. Moreover, strong links between primary and specialty care are needed for patients with a high degree of complexity. The CCM cannot be implemented without concrete buy-in and support from the senior leaders of health care organizations that encourage redesign of the outpatient care delivery system.

Delivery System Design

To provide more efficient and proactive health care, the delivery system must change from care delivered by one clinician to an expanded primary care team in which roles and responsibilities are clearly delineated. For patients with chronic illness, planned visits are a key component of practice redesign because they provide opportunities for patients to work with the health care team to address self-management goals and disease control proactively rather than only during acute exacerbations of illness. These planned visits—generally led by nurses, pharmacists, educators, nutritionists, or social workers, as well as physicians and nurse practitioners—enable adequate time for teaching and reinforcing patient self-management skills. When acute exacerbations occur, they are handled within the context of an ongoing chronic care plan, individualized for each patient. The success of this component depends on patients’ understanding and acceptance of the partnership in proactive chronic care management, which requires patients’ active participation.

The primary care practice should be designed to ensure patient access to regular follow-up care that fits with the patient’s cultural background, and which could be group visits, individual face-to-face visits, phone, e-mail, or web-based encounters. These creative strategies have been demonstrated to be effective in improving clinical outcomes including diabetes, hypertension, and hypercholesterolemia. For patients with one or two chronic conditions, health coaches—who may be nurses, health educators, trained medical assistants, or motivated peer patients—can assist patients in behavior change and medication adherence. For more complex patients with multiple concurrent illnesses, nurses trained in complex care management are needed. Care management has been demonstrated to be an effective strategy to improve patient outcomes and reduce costs for elderly patients with multiple chronic conditions. Care managers can monitor patients more closely, provide patient education, and intervene directly if the patient’s condition does not improve or worsens. Another important function of care managers or health coaches is systems navigation, assisting the patient in successful negotiation of the health care system and access to system resources.

Decision Support

Decision support for the health care team is critical to ensure best practices in chronic illness management. It includes the provision of current clinical education and national guidelines. Ready access to individual patient clinical data and aggregated registry data must be provided so that adherence of the health care team to national practice guidelines is made available and tracked. Guidelines from national organizations can be implemented more easily if they are embedded in electronic medical records so that key decisions are supported in daily practice. Access to specialist expertise should be integrated with primary care and facilitated. Evidence-based guidelines and goals of treatment should be shared with patients to encourage their agreement and their participation in care.

Clinical Information Systems

Clinical information systems provide timely and pertinent data about both individual patients and the entire population of patients cared for by a medical practice. This information is most easily provided through electronic registries. These information systems are capable of tracking clinical data by patient or panels of patients and by disease or preventive maintenance needs and results of care processes over time. They can be programmed to alert clinicians and the care team to values outside normal ranges, allowing the health care team to identify subpopulations that need proactive care and monitoring to improve clinical outcomes. Several studies have demonstrated that the use of registries for both chronic and preventive services improves clinical outcomes. A well-designed clinical information system also allows monitoring of the performance of the practice team and the health care system in meeting national guidelines for processes of care and clinical outcomes by creating a feedback system for selected quality performance measures. Electronic feedback in the form of graphs allows the care team to work on continuous performance improvement. Sharing clinical information with patients as well as the care team is essential to enlist patient participation in their own care and helps to support the patient–clinician relationship.

Self-Management Support

The final CCM component is self-management support for patients with chronic illnesses; assisting patients and their families in developing the knowledge, skills, and confidence to effectively manage problems, set goals, and actively participate in a partnership with their clinicians and health care team is the goal. People with chronic conditions spend 99.9% of their lives with their families, at work, or in the community, and 0.1% in the health care system. People with chronic conditions decide whether to eat healthy or unhealthy foods, whether to be sedentary or physically active, and whether or not to take their medications. For chronic disease, the patient, not the clinician, makes most of the decisions. If people are not informed, active participants in the management of their chronic condition, the efforts of the health care team will be of no avail. The health care team must assist patients to be informed and activated, but patients have the ultimate say.

The outcome of successful implementation of the CCM is a prepared, proactive health care team interacting with informed, activated patients. Because all CCM components are designed to encourage patients to be informed and activated, the next section of this chapter provides more details on patient self-management and the importance of patient-centered care.

Overall, the success of chronic disease management lies in fostering a patient-centered partnership between the patient and health care team. This is particularly important when caring for patients with behavioral health problems and difficult lives. The ultimate goal of this approach is to empower patients to develop the skills and behaviors that will help them self-manage their diseases to achieve better health outcomes. Several clinical trials and systematic reviews have concluded that collaborative care models in which decisions are made jointly between clinicians and patients are significantly more effective in improving clinical outcomes than care in which clinicians tell patients what to do.

Patient-Centered Care for the Clinician

Patient-centered care is a critical concept for effective management of chronic illnesses. The concept includes engaging patients in care planning as well as giving patients tools, skills, and knowledge. It means the health care team and primary clinician elicit and accept the patient’s beliefs and concerns about illness and teache key information and self-management skills in the context of the patient’s family, community, and culture, taking into consideration individual needs. The patient’s concerns are identified and addressed first (Table 39-1). The team and primary care clinician involve the patient directly in negotiating and implementing the treatment plan, making adjustments and providing options that will meet the patient’s goals. Ask: “What do you want to do this week to improve your health?” Working in collaboration with the patient, the primary care clinician and health care team design a treatment program that fits within the context of the patient’s life (Table 39-2). Potential solutions and feasible options are offered and patients are invited to choose those they are willing to accept and pursue or modify. For example, to reduce high cholesterol levels, patients are asked if they would be willing to eat more healthy foods, do more exercise, or regularly take medications. When patients can choose their treatment ­program, it is more likely they will implement it. The keyword in this context is “collaboration” to work toward goals that are acceptable to both the care team and the patient. Additionally, primary care practitioners should be aware of patients’ culturally based understanding of the disease and its treatment. Every effort should be made to deliver critical information and self-management instruction in the patient’s native language. A patient-centered partnership means that health care providers collaborate with patients to design a treatment program that takes into consideration the patient’s ­attitudes, beliefs, lifestyle, and culture to promote positive treatment outcomes (Table 39-3).

Clinician behaviors may contribute to better patient self-management, particularly in subpopulations with specific needs. A survey of an ethnically diverse, low-income sample of 956 adult patients with diabetes or asthma in 17 academic outpatient practices revealed a strong relationship between higher patient assessments of provider support and patient self-efficacy for self-care. Within the diabetes subgroup, patients who gave high ratings of provider support were significantly more likely to perform self-management tasks than those with low ratings. The findings provide support for the belief that health care providers can successfully promote patient self-management of chronic illnesses.

Problems of Living with a Chronic Illness

Living with a chronic illness presents the patient with a number of medical, social, emotional, and physical challenges that include adjusting to the natural course or progression of the disease, preventing social isolation, normalizing activities and communication within the boundaries of the illness, preventing exacerbations, controlling chronic symptoms, following complex treatment regimens, and finding the necessary financial and tangible resources to pay for treatments and potential loss of employment. To manage these problems, patients must develop a set of strategies for self-managing the disease and for coping with the problems. Teaching, facilitating, and supporting the patient’s attempts at self-management of the chronic condition is at the core of the patient–clinician–health care team relationship.

The partnership paradigm is based on acknowledging the expertise of both the clinician and team in understanding the disease, its psychological and physical impact on patients, and therapeutic interventions; and patients’ expertise about their own lives. The new paradigm of clinician/team–patient partnership supports interactions that are primarily based on the patient’s agenda, not the clinicians.’ It purports a belief that increased self-efficacy for self-care tasks facilitates behavior change that education alone cannot accomplish. In the patient-centered approach, enhanced self-efficacy is the goal rather than adherence to clinician advice. Finally, mutually agreed upon decisions are made together by the patient and clinician. Self-management support encourages patients to become more actively engaged to adopt health behaviors and develop necessary skills.

Self-Management Support Strategies

Research has demonstrated that activated patients are more likely to adopt healthy behaviors and thus have improved clinical outcomes. Several strategies to activate patients are discussed here.

Collaborative Agenda Setting

In traditional clinical encounters, the visit is guided by the chief complaint provided by the patient and the agenda is established by the clinician. In the collaborative paradigm, the agenda is negotiated between the clinician and the patient.

Information Giving Using Ask-Tell-Ask

One technique that has been used in providing patients with information is based upon the “elicit-respond-elicit” motivational interviewing technique first described by Miller and Rollnick (see Chapter 19). This method is more popularly called “ask-tell-ask,” a strategy based on adult learning theory in which individuals learn best when provided with information that they are interested in learning. Rather than giving patients a didactic lecture on diabetes, the nurse or health educator asks “What do you know about diabetes?” and “What would you like to know about diabetes?” and gives patients the information they want to know, after which they ask again whether the patient understands or has other questions. In addition, rather than telling patients that they must exercise and change their diet, the health care team member asks patients what they are willing to do to improve their health. For many health professionals who are used to telling patients what to do, this shift to collaborative interactions and shared decision making is a challenge.

Information Giving: Closing the Loop (Teach Back Method)

A simple but much overlooked strategy is asking the patient to restate instructions provided by the practitioner. It is known that 50% of patients leave a medical visit without understanding or remembering what the clinician said. “Closing the loop” or “teach back” assesses a patient’s understanding of the information provided by the practitioner. Rather than asking, “Did you understand how to take your medication?” which does not assess understanding, closing the loop involves asking, “Just to make sure I was clear, how will you be taking that new medicine?” Teach-back or check-back is a relatively simple strategy that has been associated with improved outcomes in patients with diabetes; yet few clinicians actually close the loop in practice.

Behavior Change Action Plans

Traditionally, clinicians tell patients that they must eat healthier foods, exercise, and take all their medications without their input to the treatment recommendations. Motivational interviewing studies suggest that telling patients what they are supposed to do generates resistance on the part of the patients and is thereby ineffective in encouraging behavior change. Keys to motivational interviewing technique include: (1) assessing readiness to change by determining the relationship between level of importance and level of confidence for change and (2) encouraging patients themselves to talk about a behavior change they are willing to entertain. To assess level of confidence and importance, a 0–10 scale or a picture graph can be used (Figure 39-2). Once individuals are motivated to change a behavior, they can set goals for themselves, and then agree to a specific action plan that begins the process of meeting the patient-generated goals.

Action plans are developed through collaboration between the clinician or health care team member and the patient. The action plan is very specific with identified behaviors, a start date, and frequency. For example, a patient may wish to walk 3 days per week (Monday, Wednesday, and Friday) at lunchtime, for 20 minutes, beginning next Monday. Another example may include reducing candy bar consumption to 1 per day from 3 per day and eating one piece of fruit daily.

The primary purpose of action plans is to achieve behavior change through a series of successes. Self-efficacy is defined as an individual’s level of confidence in performing a specific behavior or activity. If self- efficacy is high, the behavior is likely to be performed. Thus, enhancing self-efficacy is of primary importance in achieving long-term behavior change. Therefore, the action plan should be simple and achievable. If the patient has a low level of confidence in achieving the action plan, the team member can suggest a more achievable goal to insure success. Additionally, if self-efficacy is low, this provides an opportunity for the clinician to explore barriers to change and to develop specific strategies to promote success. In a randomized controlled trial, patients with diabetes who made action plans had significant lowering of HbA1c compared with patients who were given patient education without action plans. The key to success in implementing action plans is to engage the patients by eliciting their input and to increase their self-confidence to act.

Even with well-planned patient self-management support and the best intentions of the care team, chronic illnesses go out of control, exacerbations occur, and life events happen that compromise patients’ ability to cope. Psychosocial stress, new symptoms, progressive disease, and increased disability place additional burdens on patients with chronic illness. Increasing stress in an individual’s life, such as greater work demands, might lead to an increase in activity level, greater fatigue, muscle tension, increased or new symptoms, and the psychological experience of feeling overwhelmed. These developments may contribute to high levels of pain, dyspnea, or depression, which in turn can lead to a decline in daily functioning, immobility, and the perception of heightened disease activity. These symptoms, perceptions, and loss of control may make the individual aware of the debilitating aspects of the chronic illness and negatively affect self-esteem, contributing to a cycle of further depression, poor coping responses, worsening adherence, and an inability to adapt.

Clinicians can empower patients to be alert to the interplay of these factors in their lives. Once aware, patients can make short-term goals and action plans that interrupt the cycle, reducing stress and symptoms and increasing psychological well-being and control of the illness.

The natural history of chronic disease can be discouraging for patients and their families and for clinicians, which is why development of an effective health care team approach directed at supporting patients and their families is essential. In the end, chronic care management requires concentric circles of surveillance and care management supported by the health care system and endorsed by the community.

Patients with chronic illness encounter a number of challenges that impact every aspect of their lives. Care teams must be able to understand their patients’ internal experiences and outward expressions of their emotions and intervene in ways that promote adaptive coping, that is, having available a repertoire of responses that can be used to modulate the ebb and flow of the disease.

The goal of coping is to respond cognitively or behaviorally to manage, tolerate, or reduce the effect of a stressful acute or chronic event (see Chapter 34). The two major methods of coping are problem focused and emotion focused. Problem-focused coping consists of active efforts to change something about oneself or the environment. Emotion-focused coping involves efforts to regulate emotional distress. Most often, people tend to take action to solve problems, but when a stressful experience is uncontrollable, problem-focused coping can be counterproductive. In these situations, efforts at emotional regulation or minimizing emotional distress may be more successful at providing relief.

The problem-focused/emotion-focused distinction in coping is useful not only in understanding people’s coping efforts, but in providing guidelines to primary care practitioners about how to facilitate patients’ active involvement in their care and adaptation to chronic ­disease. Asking questions about patients’ concerns and helping them to develop coping solutions are integral to developing a patient-centered partnership that will maximize the potential for positive treatment outcomes.

Key aspects to consider for Maria include:

• Facilitating effective communication between the primary clinician, health care team, and the patient by scheduling her with a team member such as a health coach who is bilingual.

• Assessing and monitoring her depression with regular checks of the Patient Health Questionnaire (PHQ-9) by a member of the health care team.

• Monitoring Maria’s progress on her action plan through regular follow-up phone calls by the health coach.

• Checking and sharing the results of her HbA1c testing at regular intervals to provide her with feedback about her progress.

Patients who rate their confidence level at less than 7 on a 10-point scale are unlikely to maintain a change in that behavior. Here the health coach is working with Maria to identify a patient-centered and achievable behavior change that will contribute to her goal of improving her diabetes management. Goal setting is performed on behaviors that patients feel they are ready to attempt and action plans that are realistic, concrete, and short term to achieve the goals. In Maria’s case, the action plan may include walking with her husband or daughter beginning the next day for 20 minutes four times a week.

Other key elements to consider for this case as it relates to the CCM are:

• Matching of language in verbal and written ­communication.

• Goal setting and action planning can be performed by other key members of the care team. This can take place after the visit with the primary care clinician.

• Closing the loop is key in this case and can be performed by other team members as well as the primary clinician. Closing the loop assesses the patient’s understanding of the visit and what, how, and when to take medications.

• System navigation is an important health coaching function. It is important to find out if patients know where to go to get their labs drawn and whether the tests need to be performed after 12 hours of fasting. Patients need to know where they go to fill the prescriptions for medications and what assistance they can request from the pharmacist.

• Follow-up (planned) visits should be scheduled to assess progress with action plans, revise and update goals, and to address management of other chronic conditions. These visits do not need to be with the primary care clinician when it may be more appropriate for other team members with special skills to be involved. Follow-up should also be conducted by phone calls.

• Community resources may provide support outside the health care system. Maria may have access to other resources such as a park, community center, or church that organizes walking groups or other health-related activities. Referrals can be made to these organizations and may be more convenient for her than returning to the clinic at regular intervals.

• Assessment and treatment of comorbid behavioral health problems is critical for enhancing self-management. Like many patients with diabetes mellitus, Maria is also being treated for depression. The clinician knows that inadequately treated depression can contribute to worsen­ing glycemic control and that conversely, assessing and managing depression is a key component of the overall management of Maria’s diabetes.

Final key points to remember are as follows:

• After Maria’s visit is complete, her information should be entered into a computerized system that will then allow the care team to follow her BP, HbA1c, PHQ-9, weight, and so on. This information can be pulled and collated prior to her next visit as a cue to optimal management.

• Additionally, her health maintenance activities will be recorded, and the clinician or other team member will be prompted to review her health maintenance needs at the next visit.

For a primary care practice to implement the CCM requires a major transformation that has been labeled the patient-centered medical home. Fundamental to this transformation is a two-part paradigm shift: (1) From concern only with individual patients to concern with the entire panel of patients, whether or not they come for care and (2) from I (the individual practitioner) to We (the team). Practices increasingly have clinical registries with lists of patients including clinical data. Practices can train personnel to be panel managers,­ who regularly search the registries for people overdue for preventive and chronic care services that are recommended by practice guidelines, and who contact those patients to receive recommended services. To overcome the tyranny of the urgent and the 15-minute visit syndrome, practices must create well-trained teams so that patients with chronic conditions can receive planned visits led by nurses, health educators, pharmacists, psychologists, or other team members who provide self-management support, which can also be called health coaching. A health coach is any team member who interacts with patients to provide information using the ask-tell-ask model; to collaboratively set goals and action plans; to close the loop to ensure patient understanding of the care plan; to assist patients with medication understanding and adherence; and to provide support to ease the emotional burden of chronic disease. Transition to patient-­centered, team-based primary care provides a health care home for patients who require ongoing collaborative care to survive and manage their chronic illness problems. This transition requires system-wide delivery design change and the support of system-based administrative leaders.

The challenge of managing chronic conditions is one that is faced by health care leaders around the world. In many countries, noncommunicable diseases and mental health disorders account for approximately 47% of the global burden of disease, with a projected increase to 60% by 2020. Historically, public health concerns for developing countries were limited to infant mortality, population control, and malnutrition. However, concerns are growing over the additional burden of chronic noncommunicable diseases, such as tobacco-related illnesses. Although there is a surge in need for treatment of chronic conditions, delivery of care to these individuals is lacking. Developing countries often struggle with the complexity of insufficient resources and poor access necessitating creative solutions to address the increased shifting demand in health care. To address these issues, the World Health Organization (WHO) considered a variety of programs. WHO convened a group of experts from around the world to review and adapt the CCM from their countries’ perspectives. The result was the Innovative Care for Chronic Conditions (ICCC) framework. The framework includes components at a micro (patient and family), meso (health care organization and community), and macro (policy) level. The focus of the framework is to highlight the need for a comprehensive design for change to deliver effective care. The ICCC has been adapted and has been shown to be effective in improving outcomes in a number of countries. Thus, although the burden of chronic health conditions is increasing globally, changes to the health care system as demonstrated with the ICCC have great potential for improving global health.