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.
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.
These factors must be considered when building models of care for PLWHA.
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.
Figure 1. The Chronic Care Model
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:
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.
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:
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
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).
Traditional Education | Self-Management Education | |
---|---|---|
Content | Disease-specific information and technical skills | Problem-solving skills that can be applied to chronic conditions in general |
Definition of the problem | Inadequate control of disease is the problem.
|
Patient formulates the problem, which may or may not be directly related to disease. |
Theoretical construct underlying the education | Disease-specific knowledge produces behavior change and leads to improved clinical outcomes. | Patient’s self-efficacy (learned through setting short-term action plans) leads to improved clinical outcomes. |
Goal |
Patient compliance with prescribed behavior changes will improve clinical outcomes. | Increased self-efficacy will improve clinical outcomes. |
Educator | Health professional | Health professional or peer leader and other patients in the group |
Sources: Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA. 2002;288:1775-9; 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. |
Study/Model | Study
The Effectiveness of Self-Management Training for Individuals With HIV/AIDS1 Model Individualized self-management training | Study
Pilot Randomized Trial of Education to Improve Self-Management Skills of Men With Symptomatic HIV/AIDS2 Model Traditional patient education and self-care skills training | Study
The Impact of Improved Self-Efficacy on HIV Viral Load and Distress in Culturally Diverse Women Living With AIDS: The SMART/EST Women’s Project3 Model Cognitive-behavioral stress management (CBSM) training |
---|---|---|---|
Purpose | To examine the effectiveness of self-management on HIV/ AIDS patients’ health and well-being related to treatment adherence and efficacy, including coping strategies for posttreatment psychological moods and health attitudes. | To evaluate the acceptability, practicality, and short-term efficacy of a health education program to improve disease self-management in patients with symptomatic HIV/AIDS. | To examine whether changes in self-efficacy in the context of a cognitive-behavioral
intervention were related to changes in clinical (CD4, viral load)
and psychological (depression, anxiety) indicators. |
Methods | Randomization to intervention or control condition. Had 40 participants (20 intervention, 20 control); 75% White and 90% male. |
Randomization to a 7- session group-educational intervention or usual-care
control group. At baseline: 34 participants in the intervention group and 37 in the usual care group. 58 subjects (82%) completed 3-month follow-up and composed the analytic sample. |
Randomization to the CBSM group intervention or the low-intensity
comparison condition. 56 women over 18 years old; most women (65%) were African American. |
Intervention | A 7-week program administered individually twice a week for 60 to
90 minutes. Program included biofeedback for relaxation; cognitive-behavioral
management skills; anxiety, anger, and depression management; coping
skills; and psychoeducational classes. Controls in this program received standard treatment from their primary care providers; at the end of the appointment, they watched a video about nutrition and health related to HIV/AIDS, received wellness education, and were given related resources to take home. Total intervention time was 2 hours. |
Positive Self-Management Program (PSMP) curriculum,* which includes
modules on how to evaluate common symptoms and decide about seeking
care, use prescribed medications, make medication decisions and solve
medication-related problems, improve communication with caregivers
and health care providers, use cognitive-behavioral strategies and
relaxation techniques for coping with symptoms, exercise and set up
a fitness program, eat well and prepare food in a healthy manner, make
action plans, and set personal goals. Controls in this program received the usual care from the primary care physician. |
A 10-week, group, expressive-supportive therapy program (90-minute
CBSM and 30-minute relaxation component) that included didactic components
explaining physiological effects of stress, cognitive-behavioral interpretation
of stress and emotions, identification of cognitive distortions and
automatic thoughts, rational thought replacement, coping and assertiveness
skills training, anger management, identification of social supports,
and group processing of personal issues as conceptualized within the
CBSM framework. Controls in this program received 10 individual 2-hour sessions (45-minute educational videotape related to stress management, relaxation, and coping with HIV/AIDS and a 75-minute entertainment tape), once weekly. |
Outcomes | Intervention participants significantly improved in mood and had significant decreases in anger, confusion, tension, depression, and fatigue. They showed significant reduction in use of emotive, fatalistic, and palliative coping styles relative to controls and had significant reductions in their rating of effectiveness of confrontive, emotive, and fatalistic coping styles. The mean number of symptoms for the two groups did not differ significantly. Similarly, no significant effect was found for CD4 counts. | Primary outcome: Symptom status. Secondary outcomes: Self-efficacy and health behaviors. The number of severe symptoms decreased in the intervention group and increased in the control group. No significant differences were found in pain, fatigue, depression, stress, anger, or CD4 cell count measures between groups. Self-efficacy for controlling symptoms increased in the experimental group but decreased in the control group. A trend toward increased physical exercise, as well as greater HIV/AIDS knowledge improvement, was found in the experimental group. |
Increases in AIDS self-efficacy were significantly correlated with increases in CD4 count and decreases in viral load over time but not associated with changes in either depression or anxiety. Increases in self-efficacy to medication adherence were related to decreases in log viral load. Increases in cognitive-behavioral self-efficacy also were associated with decrease in viral load, depression and anxiety but not with changes in CD4 count. |
Limitations | Small sample size diminished power for some analyses, and the nonrandom sample and measures used restricted the ability to generalize. The considerable difference in total contact time for the experimental and control groups may be a confounding factor. | The study population was exclusively male, mostly White, and of a high education level, which may limit generalizability. | No significant differences between groups and no main effects of the intervention on self-efficacy were found in the sample. The study was restricted to a small subsample of a larger study and the control group was really a low-intensity intervention condition exposed to similar stress management information. |
* Note: Group classes were conducted by trained peer
leaders (one of whom had HIV/AIDS) using the PSMP manual. The sample
was significantly immunocompromised (72% had <200/mm3 CD4 cells,
and 26% had two or more AIDS-associated illnesses). 1 Inouye J, Flannelly L, Flannelly KJ. The effectiveness of self-management training for individuals with HIV/AIDS. J Assn Nurse AIDS Care. 2001;12(5):71-82. 2 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. 3 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. |
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.
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:
Results of the calls yielded important recommendations for building a
stronger self-management component of HIV/ AIDS care.
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:
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.
|
Despite the potential value of self-management, challenges are associated with its adoption.
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."
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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