The Authors

Jessie C. Gruman, Ph.D., is executive director of the Center for the Advancement of Health.

Michael Von Korff, Sc.D., is scientific investigator at the Center for Health Studies of the Group Health Cooperative of Puget Sound, Seattle, Washington.

This booklet was adapted from a paper, "Collaborative Management of Chronic Illness: Essential Elements," by Michael Von Korff, Jessie C. Gruman, Judith Schaefer, Susan J. Curry and Edward H. Wagner.

Table of Contents

Introduction
What Is Chronic Illness Management?"
The Four Principles of Self-Care
Barriers to Implementing Self-Management Strategies
Critical Next Steps Toward Collaboration
Conclusion
References

Introduction

Some 100 million Americans, 45 percent of the population, now suffer from chronic conditions such as arthritis, asthma, cancer, heart disease, multiple sclerosis, Alzheimer's, Parkinson's and diabetes.1 These millions encounter daily one of the great puzzles of modern health care:

Scientists have developed, tested and proven an array of mostly simple, commonsense strategies for helping patients manage chronic illness and its impact on their lives. Combined with routine medical care, these self-care strategies would greatly reduce the suffering and improve the quality of life for virtually everyone who has to live with such illness. Yet the health care system has been tragically slow in putting these strategies to widespread use.

In an age when health care decisions are often made based on cost-cutting criteria, the neglect is doubly difficult to understand because solid evidence makes clear that these same approaches would also dramatically cut the cost of chronic illness both in terms of medical spending and in lost productivity - a toll that is now calculated at $659 billion a year and rising.

What is Chronic Illness Management

Until now, our health care system has been better organized to diagnose and treat the acute effects of chronic illnesses than to help patients live full lives despite their condition.

Under the best of circumstances, managing life with a chronic illness is a complex and daunting task for patients and their care givers. Medical treatment is necessary, but it is not sufficient. People with chronic conditions also must make lifestyle changes, cope with pain and emotional distress and minimize the impact of their illness on work and family life. As the primary care-givers for chronic illness, patients and their loved ones must:

1. Engage in activities that promote health, build physiological reserve and prevent complications.
   
   
2. Interact with doctors, nurses and other health care providers and adhere to recommended treatment regimens.
   
   
3. Monitor the physical and emotional well-being of the patient and make decisions based on the results of that monitoring.
   
   
4. Manage the impacts of the illness on the patient's ability to function in important roles, on emotions and self-esteem, and on relations with others.2,3
   
   

Unfortunately, self-care and medical care are sometimes viewed as competing strategies, rather than as complementary. When self-care implies limited access to health care or patient rejection of medical assistance, it can carry negative connotations to patients and to their health care providers. But, medical care for chronic illness can rarely be effective if it isn't accompanied by adequate self-care. Self-care and medical care produce better outcomes together than either one individually. This occurs when chronically ill patients, their families and their health providers collaborate with one another. This collaboration entails setting shared goals, a sustained working relationship, mutual understanding of roles and responsibilities, and the skills needed to fulfill those roles.

Training and support for patients and their families improve patient outcomes across a wide range of chronic conditions. Benefits observed in numerous studies include:

1. Improved functioning
   
2. Better adherence to medical treatments
   
3. More effective control of pain and symptoms
   
4. Reduced severity of the disease
   
5. Increased confidence among patients in their ability to manage their illness
6. Enhanced sense of control over the illness
7. Emotional well-being
8. Reduced health care costs (4)

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The Four Principles of Self Care

Interventions shown to improve patients' abilities to care for themselves have been based on four principles:5

Illness management skills are learned, self-directed behaviors.

Motivation and self-confidence regarding illness management determine in large measure how well a patient is able to live with the illness.

The social environment in the family, the workplace and the health care system can support or impede self-care.

Adapting to the illness is improved by monitoring and responding to changes in the state of the disease, the symptoms and the patient's emotions and functioning.

For many chronic conditions, interventions based on these principles have been shown to improve medical, emotional and functional outcomes, particularly when providers and patients work in concert toward shared goals. For example, diabetics in one study were assigned to one of three interventions - patient-involvement in setting goals and agreeing on a course of action, physicians' problem-oriented protocols, and a combination of both. All three groups achieved better blood sugar levels, body weight and blood pressure after 26 months than did the control group that received only the usual care, but the group that received the combined collaborative intervention did best of all.6

And, in another study, when patients with Parkinson's disease were given an individualized self-care program with educational materials, the side effects from medications were reduced, the severity of their disease declined, and exercise, physical activity and self-confidence all increased in comparison to a control group.7

How can health care systems make these kinds of results the standard care for all patients affected by chronic illness? Four elements have been identified as essential to improved collaboration between patients and their doctors and nurses in managing chronic illness:

Collaborative problem definition. Patients and their doctors need to work together in defining what problems are most important. Health care providers typically define problems related to diagnosis, poor compliance with treatment regimens or continuing unhealthy behaviors, such as smoking or lack of exercise. Patients, however, are more likely to define problems of pain and other symptoms, their inability to function as they once did, emotional distress, difficulty carrying out prescribed regimens or lifestyle changes or fear of unpredictable consequences of the illness.

Patients are more likely to benefit when the two perspectives are harmonized. Even small steps by the doctor, such as asking patients to identify their biggest problems, can help doctors and patients work together more effectively.

Targeting, goal setting and planning. Patients and health care providers typically try to initiate many different changes at once. This can lead to discouragement and difficulty in following treatment regimens. Instead, patients and doctors should focus on a limited number of solvable problems, based both on the significance of the problems and on the patient's motivation and readiness to tackle them. Once targeted, having a clear goal and an action plan to achieve the goal allows both the patient and the doctor to check progress, which in turn promotes confidence and willingness to comply with regimens.

Self-management training and support. Self-care is strengthened when patients are taught the skills they need to carry out medical regimens, to change behaviors and to obtain emotional support. Patients' needs differ, so a variety of services should be available:

1. Instructions in using medical equipment (for example, teaching diabetics how to monitor blood sugar and administer insulin)
   
   
2. Peer support
   
   
3. Psychological and vocational counseling
   
   
4. Training in how to change health behaviors (e.g., smoking, diet, and exercise)
   
   

All have proven effective when they are tailored to meet each patient's motivation and are in line with the priorities upon which both patient and doctor have agreed.

Active, sustained follow-up. Patients benefit when contact with health care providers is planned and sustained over time. By contacting patients at specified intervals, health care providers can collect information on the medical and functional status of the patient. They can also:

1. Identify potential complications early
   
   
2. Check progress in implementing the care plan
   
   
3. Make necessary adjustments
   
   
4. Reinforce patients' efforts
   
   

This can be done by scheduled return visits, or by such simple steps as telephone contacts.

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Barriers to Implementing Self-Management Strategies

Why haven't health care systems done more to improve health outcomes for chronically ill people by taking these kinds of steps?

Patients, physicians and health care institutions all share in resisting the implementation of collaborative management of chronic illness.

Patients. Some barriers are rooted among patients themselves. Self-care can be difficult for a patient to sustain or even to begin, if for no other reason than that illness often brings with it pain, worry and loss of energy. Many patients react to their illness with feelings of anger, failure or denial that anything is wrong.

Lifestyle changes, like quitting smoking or changing a diet, are difficult under the best of circumstances, let alone when demoralized and under stress because of illness. For example, although increasing physical exercise is almost always beneficial, a natural response to illness is to take it easy and rest.

Family members and friends can inadvertently undermine a patient's efforts to adhere to dietary changes, exercise regimens or medications. They also may assume too many responsibilities for an ill relative, contributing to inactivity and loss of self-confidence.

Physicians. Surprisingly, physicians rarely ask chronically ill patients to share their understanding of their illness or to identify their goals.8 ,9 As a result, neither the health care provider nor the patient clarifies what objectives are most important. This reflects the broader problem of providers expecting patients to assume a passive role.

Remaining active and independent are high priorities for most people with chronic illness, but health care professionals, trained and accustomed to respond to symptoms, often do not ask about illness-related problems at work or at home. When these problems are discussed, many doctors are reluctant to talk about how to adapt because they believe they must either solve the problem (which they may feel unprepared to do) or sanction disability (which they may feel is not in the patient's best interest).

As a result, visits to the doctor remain focused on clinical and laboratory results and on medical treatments, even when controlling symptoms and finding ways to remain active may be more important, both to the patient and to the ultimate outcome.

Health Care Institutions. Institutional barriers to effective self-care can be formidable as well. The traditions of medicine emphasize diagnosis and curing acute conditions. Thus, chronically ill patients' complaints and symptoms are often treated as if they were a series of acute problems. Care is too often reactive, unplanned and unscheduled, and fails to educate, train and support patients' care of themselves.

As the organizers of health care, providers also do not make available opportunities for patients to share experiences with and learn from each other. Some patients feel isolated and uninformed, while their doctors feel overwhelmed by overly dependent and unprepared patients. The lack of social support for the chronically ill is particularly unfortunate, because social isolation has been shown to have negative effects on both physical and mental health.7 Many studies show that patients benefit from support groups in which they can discuss emotional reactions to their illness and develop coping skills, but these services are not routinely made available to the chronically ill.

Yet another institutional barrier: rarely can physicians prescribe self-management training and support services, even when they are inclined to, because no reliable referral paths exist from primary care to clinic-based self-management training and support, or to community centers or volunteer organizations that offer such services.

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Critical Next Steps Toward Collaboration

What results from the interplay of all these and other barriers is a parade of missed opportunities. In 1996, 45 leaders in health services research, health care organizations and behavioral medicine met under the auspices of the Center for the Advancement of Health and the Group Health Cooperative of Puget Sound to identify the critical steps needed to improve collaborative management of chronic illness in large health care systems.* Some ideas discussed at the conference could well be put into action by consumer and patient advocates, health plan purchasers and plan administrators. They include:

1. Report cards. The health industry is developing report cards to measure the performance of managed care health plans. Patients, consumer groups and purchasers might demand that among their measurements, these report cards gauge the degree to which each health plan and its physicians promotes and compensates the use of collaborative care-management for the chronically ill.
   
   
2. Technical support network. Large health care purchasers, such as major employers and government administrators of Medicare and Medicaid, might support creation of a network of technical support, modeled on the cooperative agriculture extension agent programs used to improve farming. This could help disseminate to health care systems across the country the results of local experiences with implementing collaborative approaches.
   
   
3. Multi-disease coalitions. Most patient advocacy groups are organized around a single disease or condition. Instead, such groups could form coalitions that represent a variety of chronic conditions, combining their individual voices to advocate collaborative-care programs that are appropriate for the chronically ill regardless of their condition.
   
   
4. Multi-disease strategies. Some of the challenges faced by patients with chronic conditions are admittedly unique to each specific illness, but many of those challenges cross such boundaries and apply to most chronic conditions. Health plan administrators and providers might realize economies of scale by taking advantage of those things that are common to most chronic illnesses. Thus, they could offer a core set of basic services to help people manage chronic disease, regardless which disease they have. Those core services could then be customized to the special demands posed by specific diseases and to the individual needs of the patients.
   
   
5. Information systems. Fundamental improvements in chronic illness care are likely to require information systems that identify patient populations with specific needs, assist in planning their care and monitor the provision and outcomes of care. The managed care industry is currently investing in development of clinical information systems. Health care professionals and consumer advocates need to evaluate these systems rigorously to assure they will fulfill that need while maintaining patient confidentiality.
   
   
6. Referrals to community services. Government health administrators, employers, community groups and patient organizations all should work to ensure that health care institutions are involved in their local communities and routinely refer chronically ill people to appropriate community services - support groups, exercise programs, transportation services and meals-on-wheels, to name a few. One such model that is already working is a pilot project that links a primary care clinic of the Group Health Cooperative of Puget Sound with a nearby senior citizens center. Together they provide chronically ill seniors such services as exercise classes, peer mentoring and self-management courses at the seniors' center.
   
   

In the long-run, however, improved chronic illness care will require fundamental changes in the organization and delivery of health care services. The health care system is changing in ways that reflect new economic, demographic and cultural realities. This presents both an opportunity and an obstacle, as economic values play a major role in decision-making.

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Conclusion

Reforming care for the chronically ill within that context will be a long and incremental process. Patients, health care purchasers and providers all have much to gain from influencing that process to ensure that the health care system serves the full range of needs of those who must live with chronic illness - psychological, behavioral and social as well as medical:

1. Health care purchasers because this approach will improve how the chronically ill and their families can function, thereby contributing to a more productive work force.
   
   
2. Providers because ultimately, this approach will help prevent costly complications of chronic disease and reduce the cost of care.
   
   
3. Patients because this approach will help them live as well and as long as they can.
   
   

However, if chronic illness self-care is to improve, the critical role must be played by those who set health-care policy, including health plan administrators. The imperative for them to meet that challenge has never been greater, as they face an escalating number of people who suffer from chronic conditions and an enormous financial burden that the unnecessary suffering imposes on both the health care system and society at large.

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References

1. Hoffman, C., Rice, D., & Sung, H-Y. (1996, November 13). Persons with chronic conditions: their prevalence and costs. JAMA, pp. 1473-1479.
   
   

2. Lorig, K. (1993). Self management of chronic illness: a model for the future. Generations, pp. 11-14.
   
   

3. Clark, N.M., Becker, M.H., Janz, N.K., Lorig, K., et al. (1991). Self management of chronic diseases by older adults: a review and questions for research. Journal on Aging and Health, 3, pp. 3-27.
   
   

4. Von Korff, M., Gruman, J.C., Schaefer, J., Curry, S.J., Wagner, E.H. (in press). Collaborative management of chronic illness: essential elements.
   
   

5. Vinicor, F., Cohen, S.J., Mazzuca, S.A., Mooman, N., Wheeler, M., Kuebler, T., et al. (1987). Diabetes: a randomized trial of the effects of physician and/or patient education on diabetes patient outcomes. Journal of Chronic Diseases, 40, pp. 345-356.
   
   

6. Montgomery, E.B.J., Lieberman, A., Singh, G., Fries, J.F. (1994). Patient education and health promotion can be effective in Parkinson's disease: a randomized controlled trial. PROPATH Advisory Board. American Journal of Medicine, 97, pp. 429-435.
   
   

7. Cassell, E.J. (1991). The nature of suffering and the goals of medicine. New York: Oxford University Press.
   
   

8. Berkman, L.F. (1995). The role of social relations in health promotion. Psychosomatic Medicine, 57, pp. 245-254.
   
   

9. Cohen S. (1988). Psychosocial models of the role of social support in the etiology of physical disease. Health-Psychology, 7, pp. 269-297.

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