Self-Management and the Chronic Care Model

The survival period for many people living with HIV/AIDS (PLWHA) who have access to highly active antiretroviral therapy (HAART) has lengthened significantly over the past 10 years. HIV/AIDS is now widely accepted as a chronic illness and, as such, requires ongoing primary care management.1,2

The evolution of HIV/AIDS into a manageable condition for many people to whom treatment is accessible has occurred in the context of a high level of chronic disease in the United States. According to Improving Chronic Illness Care, a national project of the Robert Wood Johnson Foundation, nearly half of all Americans, or 133 million people, live with a chronic condition.3

Because most health care systems were designed to respond to acute illnesses, the prevalence of chronic disease in America raises the question of how best to provide effective care over the long term.4 The answer to this question will affect the lives of hundreds of thousands of PLWHA.

HIV/AIDS: Not Just Another Chronic Illness

Treatment of chronic illness focuses on containing the disease, slowing its progression, managing its symptoms, and improving the quality of life of those affected. Most chronic illnesses, such as diabetes, asthma, and arthritis, require adherence to some type of treatment regimen, and they typically involve self-care (self-monitoring of symptoms) on the part of the patient.

Several features make management of HIV/AIDS different from other chronic illnesses.

• Adherence to antiretroviral regimens is complex and often poor due to extraordinarily rigid adherence requirements, dietary guidelines, and side effects.

• Daily self-monitoring of HIV/AIDS is difficult due to the nature of the disease itself. Unlike diabetes, no self-administered HIV laboratory tests exist that can give patients immediate feedback on the effectiveness of self-care.

• HIV/AIDS stigma persists, and the discrimination and social ostracism that many infected people experience is particularly severe. In 1999, almost 50 percent of people polled felt that PLWHA were responsible for contracting the disease.5 Disclosure of HIV status has exposed people to violence, loss of jobs and housing, and even death.6

• In addition, chronic illnesses bear some stigma. The degree of stigma largely pivots on factors such as whether the person is perceived as being responsible for acquiring the disease and whether the disease is communicable.7

These factors must be considered when building models of care for PLWHA.

What Is the Chronic Care Model?

The Chronic Care Model (CCM) comprises six interrelated components that promote high-quality health care for people living with chronic illnesses. The CCM represents a major shift from a reactive, acute-illness approach to a system in which informed, proactive patients interact with health care teams.8 Figure 1 illustrates this interaction.

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Source: Adapted from Wagner EH. Chronic disease management: What will it take to improve care for chronic illness? Effect Clin Pract.1998;1:2-4. Available at: www.improvingchroniccare.org/change/ model/components.html. Used with permission.

The six elements of the CCM represent broad concepts that may be summarized as follows:

1. Community—resources and policies refers to the need to mobilize community resources to meet patient needs. This principle also reflects the importance of encouraging patients to participate in effective community programs, the need for health care organizations to form partnerships with community-based organizations, and the role of advocacy in improving patient care.
2. Health system—organization of health care prioritizes creation of organizations and systems that promote safe, high-quality care. Providers should work toward comprehensive system change, provide incentives to improve quality of care, and develop systems for coordinating care across organizations. Support from all organizational levels is required.
3. Self-management support encompasses activities that empower and prepare patients to manage their health care. This component reflects the patient's central role in care and treatment and stresses use of self-management support strategies, including assessment, goal setting, action planning, problem solving, and follow-up.
4. Delivery system design should ensure delivery of effective and efficient clinical care and self-management support. The system should promote definition of roles among the clinical care team, a structure for communication and service delivery between the team members and clients, and regular follow-up.
5. Decision support increases the capacity of the clinical team and promotes care that is consistent with scientific evidence and patient preferences. Clinical practice should reflect treatment guidelines, which in turn should be shared and discussed with patients. Decision support should use proven methods of provider education and integrate specialist expertise and primary care.
6. Clinical information systems should use data to facilitate effective care. Data systems monitor the performance of the care system and provide reminders for both providers and patients. They also facilitate case planning and provide information necessary for coordinating care among patients and their providers.9

The improved quality and length of life for many PLWHA that have resulted from long-term efforts in each of the six elements of the CCM are regularly seen in the clinical care environment.

Research on CCM Effectiveness

The value of the CCM is reflected in the literature, especially in that related to the care of people living with diabetes. Bodenheimer and colleagues performed an extensive review of studies of diabetes care programs that applied at least one of the following components of the CCM: self-management support, decision support, delivery system design, and clinical information systems. In all, 39 studies were examined, and 32 of the 39 studies found that the intervention improved at least one process or outcome measure.10 In addition:

• Five studies that included all four components listed above yielded improved patient outcomes. Studies using fewer components also were effective.

• Some studies focusing on specific chronic conditions (i.e., congestive heart failure, asthma, and diabetes) demonstrated that CCM interventions resulted in reduced health care costs and reduced use of health care services.

No specific element of the CCM was found to be critical for effectiveness. However, 19 of 20 interventions using a self-management component improved a process or outcome measure.11

In another study, researchers tested the effects of CCM in 10,000 patients in 87 HRSA-sponsored HIV clinics for 12 months and in 45 sites for 18 months. At 18 months, 32 of the 45 sites (71 percent) were institutionalizing changes shown to be effective; of those, 14 (31 percent) were spreading the methods beyond HIV patients. Findings for key outcomes varied from site to site but generally were positive. For example, patients having a clinic visit within 3 months rose from 10 to 84 percent, depending on the site; patients with an adherence intervention at their last visit grew from 12 to 82 percent; and patients on HAART increased from 10 to 15 percent. Obstacles included staff turnover, lack of staff time, inadequate site or community resources, and lack of institutional buy-in or leadership.12

The CCM and Self-Management

Most of the literature on the CCM focuses on a particular element or subset of the six CCM elements rather than the CCM in its entirety. The self-management support component, in particular, has received a significant amount of attention, perhaps reflecting that patients with chronic conditions need—and want—to be able to manage as many aspects of their disease as possible.

Self-management support is not synonymous with patient education (Table 1). Several reviews of studies of self-management interventions for various chronic conditions (e.g., diabetes, asthma, and arthritis) revealed that including training in problem-solving skills can lead to better clinical outcomes than providing patient education alone (Table 2).

Integrating Self-Management Into HIV/AIDS Care Models

Treatment improvements have made HIV/AIDS a chronic, manageable condition for PLWHA who have access to HAART. People without access to HAART and those not yet on a medication regimen also can benefit from self-management by addressing factors such as nutrition, oral health, sexually transmitted diseases, and prevention of other infections. This development has brought a shift from palliation alone to case management-focused care. Case management plays a significant coordinating role in the care of PLWHA—and of people living with many other chronic conditions. Except in the area of medication adherence, however, case management models implemented among PLWHA have not always emphasized the self-management component of the CCM. Self-management provides an opportunity to offer consumers increased autonomy and better health, and it offers providers the opportunity to provide relief to overburdened case managers, reduce investment in some case management services, and use cost savings for other critical services.

Table 2 summarizes the results of three studies in which self-management interventions were implemented and evaluated among three diverse populations of PLWHA. The first self-management training intervention resulted in significant decreases in anger, confusion, tension, depression, and fatigue.13 In the second study, a decrease in the number of severe symptoms was reported in the intervention group, as was an increase in self-efficacy for controlling symptoms.14 The third study, an intervention among 56 HIV-positive women, found that increased AIDS self-efficacy—that is, confidence in their ability to manage their illness and achieve their personal goals—was significantly correlated with increases in CD4 count.15 These results underscore the importance of giving increased attention to self-management skills among PLWHA.

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CCM: Views From Providers

In summer 2005, HRSA's HIV/AIDS Bureau (HAB) conducted a series of conference calls among HIV/AIDS clinicians regarding utilization of the CCM. Participants in the calls focused on the following topics:

• Use of the group-visit model to disseminate self-management education

• The interface between CCM, quality improvement, and quality management

• Specific concepts that should be included in an HIV self-management curriculum

• Barriers or challenges to implementing an HIV/AIDS self-management program.

Results of the calls yielded important recommendations for building a stronger self-management component of HIV/ AIDS care.

Merging Group Visits and Self-Management Education

An alternative to the traditional one-patient office visit is group visits. The high productivity demands that clinicians face today place considerable limits on patients' access to them. One potential result is reduced opportunity for patient education and self-management training.

Participants in the HAB conference calls noted the positive effect that group visits can have on patients. For example, in contrast to the typical 15-minute visit, a 2-hour group visit with 15 to 20 patients, all of whom have the same chronic illness, allows ample time for education and discussion. In addition:

• One pilot study of patients with poorly controlled type 2 diabetes found that those who attended group visits experienced a 32 percent reduction in total cholesterol/HDL ratios, a 30 percent reduction in HbA1c levels, and a 7 percent decrease in health care expenses after 1 year.16

• A 2-year randomized clinical trial of 321 older patients with a chronic condition enrolled in Kaiser Permanente in Colorado found positive results in several areas as well. Compared with controls, group-visit participants had fewer emergency room visits, visits to subspecialists, repeat hospital admissions, and phone calls to physicians (although more phone calls to nurses) and greater satisfaction with care.17

Self-Management Curriculum Components

The fusion of self-management principles with the group-visit model is not a new idea. Since the mid-1980s, Kate Lorig and others at the Stanford Patient Education Research Center have been developing, implementing, and evaluating self-management programs for people living with a chronic disease. The Arthritis Self-Management Course (also known as the Arthritis Self-Help Workshop) was the first self-management program, and it became the prototype for subsequent self-management programs for other illnesses, including general chronic disease, HIV, back pain, and diabetes. Self-management training takes place in workshops of 8 to 15 participants.

The workshops, which generally are 6 weeks long, meet once per week for about 2 hours and are led by lay leaders. Drawing on social cognitive theory, the programs emphasize increasing participants' self-efficacy. In addition, the meetings are highly interactive and focus on building skills, sharing experiences, and providing mutual support.

At follow-up, program participants have shown significant improvements in their health status (in terms of fatigue, shortness of breath, pain, role function, depression, and health distress), health behavior (i.e., exercise, cognitive symptom management, and communication with physicians), and self-efficacy; in addition, they report fewer emergency room visits than usual-care control subjects.18-21 Given the positive outcomes for other chronic conditions, this template can aid in the development of an HIV/AIDS self-management curriculum, which might include the elements listed in Figure 2.

Challenges to Implementing an HIV/AIDS Self-Management Program

Despite the potential value of self-management, challenges are associated with its adoption.

• Clinician Buy-In. As one physician stated, "Many clinicians feel that healing is what happens when you are in a room with a patient. It’s hard for some of us to give that up."7 Yet, clinician buy-in is key, and proponents of self-management believe that the ultimate goal should be a physician-patient collaborative in which physicians and patients make health care decisions together.

• Reimbursement for self-management education. Medicare, Medicaid, and most private health insurance companies do not reimburse for self-management education, and no standardized billing code exists for group visits. Group visits are a billable service, however, if a physician can clearly document that he or she performed a history and examination, reviewed a plan of treatment, or conducted medical decision making during the visit. One option is to assign a clinician to the group; he or she can then examine each patient during the group meeting time.

• Disclosure of positive status in a group setting. The stigma associated with HIV/AIDS places a major psychological burden on patients. Therefore, many patients are reluctant to disclose their HIV status—even to a group of HIV-positive individuals. Patient education groups with mixed-risk activities, however, have been successfully implemented.

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HIV/AIDS Bureau Resources

Training Manual: HIV/AIDS Bureau Collaboratives: Improving Care for People Living with HIV/AIDS Disease
In the past 2 years, more than 80 U.S. health centers, clinics, and hospitals have been working on a specific clinical or operational area to improve the care of people with HIV/AIDS (PLWHA). A new manual, HIV/AIDS Bureau Collaboratives: Improving Care for People Living With HIV/AIDS Disease, gathers the best of what these health centers have learned so far about improving the care of PLWHA and related chronic illness.

The training manual is available free of charge on CD-ROM or as a printed binder. For more information, contact www.ihi.org.

DVD: Working Together for Better Care: HAB's Improving HIV Care Collaboratives
Working Together for Better Care: HAB's Improving HIV Care Collaboratives, developed through the HIV/AIDS Bureau's partnership with the Institute for Healthcare Improvement, is an instructional DVD that provides examples of how CARE Act grantees have successfully and dramatically improved the quality of care for clients with HIV. The DVD includes a 7-minute version and a 22-minute version. A list of quality-related resources available to CARE Act grantees is provided with the DVD.

The DVD will be available from the HRSA Information Center, www.ask.hrsa.gov/ index.cfm. The 7-minute version can be viewed as streaming video by going to www.ihi.org/IHI/Topics/HIVAIDS and selecting the DVD under "Host Picks."

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Conclusion

A major part of the CARE Act's mission is to improve the quality of care and, ultimately, the quality of life for PLWHA. The incorporation of self-management education into CARE Act activities could empower patients to take a more proactive role in managing their illness and improving their quality of life. Moreover, HIV/AIDS self-management programs have the potential to serve as the foundation for a more effective and satisfying patient-provider partnership, to enhance the psychosocial and physical health of PLWHA, and reduce the resources needed for case management.

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References

1. Siegel K, Lekas HM. AIDS as a chronic illness: Psychosocial implications. AIDS. 2002;16(suppl 4):S69-S76.
2. Bartlett JG, Cheever LW, Johnson MP, et al. Primary care as chronic care. In: Bartlett JG, Cheever LW, Johnson MP, et al. (eds.), A Guide to Primary Care for People With HIV/AIDS. 2004. Available at: http://hab.hrsa.gov/tools/primarycareguide/PCGchap1.htm.
3. MacColl Institute for Healthcare Innovation. Improving Chronic Illness Care Project. The chronic care model. Available at: www.improvingchroniccare.org/change/index.html.
4. Wagner EH, Austin BT, Von Korff M. Improving outcomes in chronic illness. Managed Care Q. 1996;4(2):12-25.
5. Siegel K, Lekas HM. AIDS as a chronic illness: psychosocial implications. AIDS. 2002;16(suppl 4):S69-S76.
6. Herek GM, Capitanio JP, Widaman KF. HIV-related stigma and knowledge in the United States: prevalence and trends, 1991-1999. Am J Public Health. 2002;92(3):371-7.
7. Herek et al., 2002.
8. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA. 2002;288:1775-9.
9. MacColl Institute for Healthcare Innovation. Improving Chronic Illness Care Project. The Chronic Care Model: model elements. Available at: www.improvingchroniccare.org/change/model/components.html.
10. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness: the Chronic Care Model, part 2. JAMA. 2002;288:1909-14.
11. Bodenheimer et al., 2002.
12. Sherer R, O’Neill J, Barini-Garcia M, et al. Testing innovative quality improvement (QI) methods for HIV care in 10,000 patients (Pts) in 87 HIV clinics in the US: The HRSA/IHI HIV Collaborative. Int Conf AIDS. 2002, Jul 7-12;14:(abstract no. B10641).
13. Inouye J, Flannelly L, Flannelly KJ. (2001). The effectiveness of self-management training for individuals with HIV/AIDS. J Assn Nurse AIDS Care. 2001;12(5):71-82.
14. Gifford AL, Laurent DD, González VM, et al. Pilot randomized trial of education to improve self-management skills of men with symptomatic HIV/AIDS. J Acquired Immune Deficiency Syndromes Hum Retrovir. 1998;18:136-44.
15. Ironson G, Weiss S, Lydston D, et al. The impact of improved self-efficacy on HIV viral load and distress in culturally diverse women living with AIDS: the SMART/EST Women’s Project. AIDS Care. 2005;17:222-36.
16. Masley S, Sokoloff J, Hawes C. Planning group visits for high-risk patients. Fam Pract Mgmt. 2000;7(6):33-7.
17. Beck A, Scott J, Williams P, et al. A randomized trial of group outpatient visits for chronically ill older HMO members: the Cooperative Health Care Clinic. J Am Geriatr Soc. 1997;45(5):543-9.
18. Lorig KR, Ritter PL, González VM. Hispanic chronic disease self-management: a randomized community-based outcome trial. Nurs Res. 2003;52:361-9.
19. Lorig KR, Sobel DS, Ritter PL, et al. Effect of a self-management program on patients with chronic disease. Effect Clin Pract. 2001;4(6):256-62.
20. Lorig KR, Ritter PL, Stewart AL, et al. Chronic Disease Self-Management Program: 2-year health status and health care utilization outcomes. Med Care. 2001;39:1217-23.
21. Lorig KR, González VM, Ritter PL. Community-based Spanish language arthritis education program: a randomized trial. Med Care. 1999;37(9):957-63.

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For More Information

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To find the nearest Medicaid office, contact the State Medicaid agency.

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