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Three-quarters of the national health budget of $1.2 trillion--about 15% of 1999 Gross Domestic Product (GDP)-- is spent on chronic disease. Experts agree that major changes in chronic care are urgently needed--changes that could save lives, improve the quality of life, and save money.
Chronic conditions, unlike acute diseases, can not be cured and are likely to last more than a year, limit what one can do, and require ongoing medical attention. In the U.S., chronic conditions affect about 125 million people and are the leading cause of illness, disability, and death. An estimated 60 million people have two or more chronic conditions.
As a nation we ignore, underuse, and--through poor allocation of resources--actually prevent implementing--a variety of effective chronic care strategies. We believe that a wide range of non-acute as well as chronic conditions can be managed with new strategies.
New models of chronic care have the potential to reduce urgent and emergency care and to reduce the side effects of chronic disease and non-acute conditions, thus leading to an improved quality of life and significant cost savings in the total care of patients. Diabetes is perhaps the best-known success story. People with diabetes need to be educated in the management of their condition, to monitor their blood sugar levels, and to use diet, exercise, medications, and injections of insulin to minimise the impact of diabetes on their health. Sleep apnea, a common sleep disorder and chronic obstructive pulmonary disease (COPD) are also chronic/non-acute conditions that respond to continuing daily care and management by the patient.
The Robert Wood Johnson Foundation conceives of chronic care as "...a spectrum of integrated services--medical, personal, social, and rehabilitative care--that assist people with chronic health conditions in living fuller lives."
Appropriate treatment of chronic conditions helps people with chronic diseases to maintain independence and a high level of functioning, while minimizing the consequences of their disease. Such care requires new relationships among patients and health care professionals. According to Edward H. Wagner and other advocates of change, the challenge is "to transform the health care system from reactive--responding mainly when a person is sick--to proactive, with a focus on keeping a person as healthy as possible." Adequate primary care can either prevent the onset of a condition or effectively manage a chronic condition and reduce the risk of hospitalization. In addition, chronic conditions require an integrated network of professional expertise plus great reliance on family, friends, and community organizations. Coordination of care is especially important when the patient has more than one chronic condition--and there are 60 million such patients.
Experts believe that health care which implements the best concepts in chronic care will lead to reductions in urgent and emergency care and a reduction of side effects of chronic disease, thus leading to significant cost savings in the total care of patients. Even in the absence of cost benefits, appropriate chronic care may lead to an improved quality of life.
People with chronic conditions can get better health outcomes when they participate in managing their health care. Health care for non-acute/chronic conditions can not be effective when it takes place only in a "medical" setting. It must take place wherever the patient is and at all times. Therefore, instead of health care taking place solely in the doctor's office, it is essential to change the location, timing, and frequency of interaction between medical professionals and their patients. In addition to a medical team which receives patients in the office, seeing any one patient only a few times each year, a patient can also have frequent contact with a medical professional without going in to the office. The patient needs information, support, and timely communication with health care professionals, while the medical team needs communication with the patient and his/her support network in order to aprovide timely advice or intervention. Innovative programs will involve disease management, telemedicine, Internet community, and consumer medical informatics. The changes in interaction mediated by these technologies and methods may be a bridge across the office/community boundary with the potential for improving the nature of relationships in health care.
The challenge is to support and lead the emerging standard of chronic disease management. New systems are needed to integrate information into systems for training and education; to enable and support culture change; and to enhance new patterns of interaction and information use. The health care system needs complementary services and capabilities to enable enhanced relationships among doctors, patients, families, and other professional and lay personnel. New models of care, based on medically proven principles, can improve the health and well-being of patients, and needs to encompass training, education, publications, and consulting for physicians, health professionals, patients, and their families. Caregivers need to learn how to organize a full regimen of care that may span relatives, friends, and community services as well as hospitals, home health care, and social service agencies. Coordination and communication are vital.
Effective programs will use existing building-blocks that have already shown promise in improving health care.
Based on a review of the current state of chronic disease management, we see a tremendous potential for improved quality of health and life along with a potential reduction in overall health costs.
Why isn't this being done already? The core of the problem is that medicine is trying to deal with chronic disease using the tools of acute medicine--and acute medicine itself is struggling to maintain quality while containing costs. The new models of chronic care require changes in traditional doctor-patient interaction, including having patients take charge of their own conditions, and are based on a variety of life-style and medical interventions taking place outside the doctors' office. Medicine has not embraced these changes eagerly. Except for the patient, there is no institution, specialist, or other caregiver that will benefit from the impact of these new models, while success is likely to reduce the income of some components of the health care system. For example, although better routine management of COPD is likely to reduce visits to pulmonologists working in emergency rooms, there are no incentives for the primary care doctor or specialist to provide care that improves health and avoids the need for urgent care.
The leverage for change includes the potential for lowering total health care costs in chronic disease management; extending the competence, reach, and influence of the medical professional; and enabling patients and their families to lead healthier lives.
At New Technology Publishing, Inc., we have worked with nationally recognized experts in sleep medicine and pulmonary medicine, together with patients, to create handbooks to educate, support, and motivate individuals with sleep apnea and COPD. Sleep apnea and chronic obstructive pulmonary disease (COPD) are two of many non-acute/chronic conditions that can respond well to medical treatment, provided that the person with the condition persists in the daily routines of disease management. Our publications are based on the belief that an informed patient can work closely with the medical team in order to achieve the best possible health outcome.
Sleep apnea is a disorder of breathing during sleep that can hasten death as well as cause disease and disrupt normal life. Yet it responds dramatically to treatment. However, most people with sleep apnea are never identified and diagnosed. In fact, research by William Dement and his colleagues has shown that primary care doctors overlook nearly all cases of sleep apnea as well as other sleep disorders. Doctors receive very little training in sleep medicine. And when they attend refresher courses in cardiac disease, sleep apnea may not even be mentioned, despite research showing that apnea can increase the risk of heart disease and death, and that treatment for apnea can eliminate essentially all that risk. A large number of patients who are diagnosed either refuse treatment or abandon it, although more intensive support, trouble-shooting, and education can largely eliminate drop-outs and help assure long-term success in treatment.
COPD is a chronic, progressive disease of the airways, including the lungs. It is usually caused by smoking. Unless treated in a proactive fashion, the disease worsens and progressively limits the ability of the person with COPD to undertake normal activity. The disease may lead to infections and other flare-ups, which require emergency treatment in hospital, at great expense. Patients who take charge of COPD can work with their physicians and other health care workers to use lifestyle changes, exercise, nutrition, medication, and rehabilitation training to arrest the progress of the disease and lead a more normal, active life. This approach is much less costly than the more common practice of periodic heroic, expensive interventions when a crisis occurs. Unfortunately, most people with COPD do not have the opportunity to take advantage of the lifestyle and rehab approach. Many doctors are not aware of the options and there is little support for rehab programs, compared to the availability of emergency rooms and intensive care.
In addition to our publications on sleep apnea and COPD, we have made available extensive information on these conditions for free use through HealthyResources.com. While we are proud of the impact of these publications, we recognize that we are only reaching a small fraction of the people who might benefit from using modern concepts of disease management. We also heard from many patients that there is great resistance in the health care system to the information and the model implicit in our work. Better books on more chronic conditions and better-designed web sites are only a part of the solution.
To achieve the far-reaching changes that experts propose, citizens, including patients, may need to engage in advocacy and political action. When people have organized around specific diseases, they have been able to change the medical establishment, increase support for research, and raise awareness. Perhaps we need to organize a campaign to "Tell your doctor," because patients may be receptive to and supportive of new programs that can help them achieve a better quality of life.
Our point of departure is melding medical science with a new model to meet the needs of people with chronic diseases, their families, and their communities.
Please visit our blog articles dealing with chronic disease and feel free to add your comments.
Preventing Disability in the Elderly With Chronic Disease. Research In Action, Issue 3. AHRQ Publication No. 02-0O18, April 2002. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/elderdis.htm
Committee on Quality of Health Care in America, Institute of Medicine; 2001; Crossing the Quality Chasm: A New Health System for the 21st Century.
National Academy Press: Washington DC (Quality2001) http://www.nap.edu
Robert Wood Johnson Foundation, 1996, Chronic Care in America: A 21st Century Challenge
CDC: The Burden of Chronic Diseases as Causes of Death; Deaths Due to Four Chronic Diseases as a Percentage of All Deaths, United States, 1996
Robert Wood Johnson Foundation, Patient Education and Consumer Activation in Chronic Disease, Meeting Proceedings.
The Global Initiative for Chronic Obstructive Lung Disease (GOLD), initiated by the US National Heart Lung and Blood Institute and World Health Organization;
Rick Carter, Ph.D., Brooke Nicotra, M.D., and Jo-Von Tucker, COPD patient, with Forewords by Dr. Thomas Petty, M.D., and Dr. Brian Tiep, M.D. Courage and Information for Life with Chronic Obstructive Pulmonary Disease: The handbook for patients, families, and care givers managing COPD (emphysema, asthmatic bronchitis, or chronic bronchitis). New Technology Publishing. 1971 ISBN 1-882431-07-3.
Kapur V, Strohl KP, Redline S, Iber C, O'Connor G, Nieto J., "Underdiagnosis of sleep apnea syndrome in U.S. Communities," Sleep Breath 2002;6(2):49-54.
Jose M Marin, Santiago J Carrizo, Eugenio Vicente, Alvar G N Agusti, Long-term cardiovascular outcomes in men with obstructive sleep apnoea-hypopnoea with or without treatment with continuous positive airway pressure: an observational study Lancet 2005; 365: 1046-53
T. Scott Johnson MD, William Broughton, MD, and Jerry Halberstadt; with contributions by B. Gail Demko, D.M.D., Forewords by Carl E. Hunt, M.D., Director, National Center on Sleep Disorders Research, NHLBI, NIH, William C. Dement, M.D., and Colin E. Sullivan, M.D. Sleep Apnea--the Phantom of the Night: Overcome sleep apnea syndrome and snoring. Onset MA: New Technology Publishing, Inc., 2003. ISBN: 1-882431-05-7
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