Center for the Advancement of Health Milbank Memorial Fund


Patients as Effective Collaborators
in
Managing Chronic Conditions


July 1999

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Table of Contents

   Foreword

   Acknowledgments

   Introduction

   Barriers

   Cost
   Hospital-Centered Care
   Insurance Coverage

   Self-Management of Chronic Illness

   Heart Disease
   Diabetes
   Arthritis
   Asthma

   What Purchasers Have Learned

   Notes

   References







Foreword

This report summarizes evidence that patients can collaborate effectively with health professionals in carefully designed programs to manage their chronic conditions. Effective self-care can reduce mortality and disability, increase productivity, and reduce health care costs. However, most professionals do not prescribe and most payers do not reimburse interventions to promote better self-care that have been judged effective as a result of rigorous evaluation.

Each of the interventions described in this report has advocates, but self-help methods that have not, or not yet, met rigorous tests of their effectiveness do as well. In the absence of widely accepted standards for self-help programs, patients, purchasers, payers, and professionals have good reason to be wary of the claims of advocates.

The report is the result of collaboration between the Center for the Advancement of Health and the Milbank Memorial Fund. The Center is a nonprofit organization funded by foundations and public agencies to promote greater recognition of the influence of psychological, social, behavioral, and environmental factors on health and illness. The Center's projects aim to integrate these factors into the national health research agenda and health care delivery. The Fund is an endowed national foundation, established in 1905, that works with decision makers in the public and private sectors to carry out nonpartisan analysis, study, research, and communication on significant issues of health policy.

Many experts who participated in the writing of this report recommend that the agencies that accredit health plans and rehabilitation programs set standards for programs that encourage self-management of chronic disease. As the report describes, officials of two leading agencies have begun to show interest in considering this recommendation.

The persons who contributed to the creation of this report are identified in the Acknowledgments. Lynn Payer, a journalist, conducted initial interviews with experts on self-care and decision makers in the public and private sectors. Staff of the Center and the Fund did additional reporting and wrote the report.

Daniel M. Fox
President, Milbank Memorial Fund

Jessie Gruman
Executive Director
Center for the Advancement of Health





Acknowledgments

The following persons participated in meetings to plan this report and/or reviewed it in draft. They are listed in the positions they held at the time of their participation.

Nancy Dunham, Deputy Director, Wisconsin Health Care Network, Department of Preventive Medicine, University of Wisconsin School of Medicine; Jonathan M. Fuchs, Vice President, Managed Care, Employers Health Insurance; Donald E. Galvin, President and Chief Executive Officer, CARF, The Rehabilitation Accreditation Commission; Jessie C. Gruman, Executive Director, Center for the Advancement of Health; Hal Holman, Department of Immunology & Rheumatology, Stanford University; Julie Hopkins, Quality Assurance Consultant, Pasadena, Calif.; David Kindig, Professor of Health Administration, University of Wisconsin School of Medicine; Christine M. MacDonell, National Director, Medical Rehabilitation Division, CARF, The Rehabilitation Accreditation Commission; Suzanne Mercure, Principal, Barrington & Chappell; Roger C. Merrill, Corporate Medical Director, Perdue Farms Inc.; Peter J. Miller, President and Chief Executive Officer, Intensiva Hospital of Sioux Falls; Velvet G. Miller, Deputy Commissioner, New Jersey Department of Human Services; Arnold Milstein, Managing Director, California Business Group; Mark Minsloff, Vice President, HMO Partnerships, American Medical Security; Keith Orton, Regional Director, Mental Health, U.S. West; Patricia M. Owens, President, Integrated Disability Management, A Division of UNUM America; Charles Palmer, Director, Iowa Department of Human Services; Linda Shelton, Director, Policy and Product Development, National Committee for Quality Assurance; Mary Stuart, Executive Director, Maryland Collaboratory for Business and Health, University of Maryland, Baltimore County; James M. Verdier, Assistant Secretary for Medicaid Policy and Planning, Indiana Family and Social Services Administration; Edward Wagner, Director, Center for Health Studies, Group Health Cooperative of Puget Sound; Kenneth D. Wells, Corporate Medical Director, Tenneco.


As you read the text of this report, click for references.


Introduction

Many people with chronic conditions can lead more productive lives by collaborating in managing both the physical and psychological effects of their illness. There is considerable evidence that patients themselves can effectively play a major role in managing their chronic conditions.

For a range of conditions, interventions that promote better self-care have been shown to reduce mortality, disability, absenteeism, loss of productivity, and unnecessary health care utilization. Despite the benefits, these interventions are not routinely prescribed, reimbursed, or available to the millions of people who could benefit from their use.

Purchasers of health care, especially private employers and officials of federal, state, and local governments, have strong incentives to seek out and invest in those services that have a demonstrated ability to help people care for themselves. Programs that help patients take better care of themselves can be less expensive than medical treatment. Some such programs more than compensate for their cost with savings in medical expenses and increased productivity. Moreover, self-management support programs are often popular with patients.

This report presents the rationale and evidence for including patient self-management programs among covered health care services. It describes the consensus among researchers about elements that contribute to effective programs and barriers to adoption of these innovative approaches. It also offers examples of interventions for four common chronic illnesses: asthma, diabetes, heart disease, and arthritis. The report then describes recent experiences of some purchasers with self-management programs, including their concerns about contracting for these services as part of their health benefits. These concerns include doubts about claims that self-management is effective and the difficulty of identifying programs of appropriate scope and quality.

According to Catherine Hoffman of the Henry J. Kaiser Family Foundation, nearly half the people in the U.S. are living with chronic conditions, at a cost of $234 billion in lost productivity and $425 billion in medical spending per year. These figures are rising. Moreover, they do not include billions of dollars in lost productivity of employees who miss work to care for family members who have chronic conditions.

A bad case of influenza or an incapacitating injury may cause an employee to miss a few days or even weeks of work, but a chronic condition such as low back pain, asthma, or arthritis can repeatedly render an employee unproductive (or underproductive) for days or weeks, year after year. Acute episodes of chronic conditions frequently require hospitalization and extended absences from work. Results of a 1997 Gallup study found that persons with a chronic illness were 50 percent more likely to miss a week of work than those without such conditions. Some self-management programs have been shown to reduce the incidence of acute episodes.

Many people with chronic conditions, as well as family members who care for them, also suffer needlessly from the physical and emotional effects of their illness. By helping people change their behaviors and adapt to their conditions, self-management programs often increase people's adherence to medical treatments, strengthen their control of pain and symptoms, and improve their overall emotional well-being.

Although researchers in clinical medicine, nursing, social science, and education have developed and tested strategies to help patients better manage their conditions, most patients never become acquainted with these programs. One survey found that only 1 in 50 patients with asthma knew how to correctly use inhalers to administer their medication. Even in those cases in which patients are given the necessary information, it may not be provided in a manner appropriate to the emotional situation, educational level, or cultural background of those who need it.




Barriers

Programs that help patients manage their chronic conditions and cope with the physical and emotional consequences are not widely available, primarily as a result of the economic incentives at work among those who make health care purchase decisions––both purchasers and providers.

Cost

The four conditions for which self-management support services are examined in this report––heart disease, diabetes, arthritis, and asthma––collectively cost the nation an estimated $457.6 billion a year. But the mobility of the American workforce creates disincentives to reduce this cost, especially for private-sector employers. According to the U.S. Bureau of Labor Statistics, the average man changes jobs every four years and the average woman changes jobs every three and a half years. Thus, purchasers have a disincentive to invest in interventions that do not have payoffs within that time frame, and with self-management of chronic conditions, the benefits accumulate over a lifetime.

Hospital-Centered Care

When infectious diseases and injuries were a more significant cause of mortality and morbidity than they are today, they were often treated most effectively in hospitals––centralized institutions capable of housing the staff and technology needed to perform diagnostic tests and surgery and providing intensive care.

However, chronic conditions are now a more significant cause of death and disability, and hospitals are inefficient institutions for managing chronic conditions. A person with diabetes does not need to go to a fully equipped and specially staffed hospital to manage blood sugar, adjust insulin dosage, stop smoking, and exercise properly. Rather, hospitals now function as places where patients go when their daily management of chronic conditions fails, or if they have no ongoing management––for example, when a patient with diabetes goes into insulin shock or has a limb that must be amputated. Such conditions could be prevented with well-established methods of self-management supported by decentralized facilities.

Insurance Coverage

Insurers traditionally have paid more generously for treatment of the acute episodes of chronic conditions than for managing those conditions to prevent such episodes. For example, until 1997, Medicare did not pay for the test strips people who have diabetes must use to monitor blood sugar. It did, however, pay for amputations that might have been avoided by management that included such monitoring.

Some insurers and risk-bearing managed care organizations seek to contain costs by promoting illness management that encourages patient self-care. But according to Kate Lorig, a researcher at Stanford University who has developed structured patient education groups for people with arthritis and other chronic conditions, ěpatient education is still considered a nice extra, not an effective treatment.î Because patient education is not tied to a specific profession or specialty, she says, it has no strong constituency of advocates. When patients had little access to anti-inflammatory drugs for treating arthritis, ěthere was an outcry from the medical and health professional communities, [but] there is no similar outcry when patients are denied the treatment of self-management education.î

Those health care programs that support self-management as a way of reducing or limiting the consequences of a chronic condition are not necessarily the same ones that reap the financial benefits of fewer medical visits in later years. Managed care plans financed by capitation (a set fee per patient) have an economic incentive to help patients manage their chronic conditions only if enrollees remain with a plan for a period of years. Because 16 percent of a health planís population will disenroll each year, and therefore take the benefits of self-management support to a competing provider, health plans are more likely to pursue other cost-saving measures such as covering fewer services or otherwise encouraging members to use health care less often. ěIn theory,î according to Mary Stuart, executive director of the Maryland Collaboratory for Business and Health at the University of Maryland/Baltimore County, and a former senior official in that stateís government, ěcapitation ought to be the great solution.î In practice, however, patient turnover has frustrated that promise.

Moreover, insurers worry that by adopting exemplary programs for self-management of chronic conditions they will attract more of these costly patients than they would otherwise. As a result, total costs would increase for a health plan with an exemplary program.

To cope with the high cost of treating chronic conditions, many insurers have instituted disease management programs. Many of these programs include some support for patients in self-management and caregiving. Others are limited to what Neal Friedman, medical director of Disease Management for Lovelace Health Systems, calls ětherapeutic managementî––identifying which drugs each patient should be taking, how often, and in what dosage, rather than combining this with social support, stress reduction, self-efficacy, and other efforts to help patients self-manage both the physical and psychosocial aspects of illness.




Self-Management of Chronic Illness

The skills a patient needs for effective self-management of chronic conditions are difficult to develop and hard to sustain. Lifestyle changes (such as quitting smoking, exercising, or sticking with a prescribed treatment) are difficult under any circumstances, especially when a person is in pain, under stress, fatigued, or demoralized.

Researchers in medicine, nursing, social science, and education have developed programs to help patients acquire and improve those skills and develop the confidence necessary for assuming a major role in managing their chronic conditions. A first step in helping patients manage their conditions is to inform them about their illness and what they can do to minimize its impact on their lives. But, as Stanford Universityís Kate Lorig points out, ěInformation is necessary, but itís not sufficient. If all people needed was information, nobody would be overweight or smoke.î

Research has demonstrated that adults change their behavior when they can see that such change will benefit them and if they are confident that they can do so successfully. Because reaching goals gives patients a sense of control over their chronic conditions, which can lead to the setting of more rigorous goals at the next level, those programs that have proven successful encourage patients to set realistic and graduated goals for behavior change rather than attempt dramatic change all at once. As patients set and reach more and more advanced goals, their sense of control often improves over time.

The three most essential elements of effective self-management interventions, according to Michael Von Korff and colleagues at the Group Health Cooperative of Puget Sound, are:

  1. teaching patients to manage their illness as well as they can
  2. tailoring programs to individuals and offering ongoing professional support
  3. following patients regularly over time

The sections below provide some examples of programs that, according to rigorous, peer-reviewed research, have helped patients self-manage four of the most common chronic conditions: heart disease, diabetes, arthritis, and asthma.

Heart Disease

Heart disease cost the nation almost $260 billion in 1998, according to the American Heart Association. Although heart disease may be treated in its acute manifestations, a large proportion of heart attacks occur as a result of many years of progressive narrowing of the coronary arteries. Having had a heart attack, survivors are at increased risk of having subsequent attacks.

Patients who have had heart attacks can usually benefit from:

  • taking certain medications daily, especially beta-blockers and aspirin
  • a controlled exercise program
  • treatment of the risk factors of high cholesterol, high blood pressure, smoking and excess weight. This usually requires modifying the diet and may involve taking additional medications.
  • help in coping with anger, depression, and social isolation

Nearly everyone recognizes that preventing heart attacks and repeat heart attacks means reducing risk factors through behavioral interventions. This involves more than simply handing patients preprinted instructions. For example, anger, depression, and social isolation greatly increase the likelihood that survivors of heart attacks will have subsequent attacks. Evidence indicates that adding psychosocial intervention to a rehabilitation program can further reduce the death rate the next year by 41 percent. The following interventions have shown promise.

  • In one study, rehospitalization costs for cardiac patients who received comprehensive rehabilitation after their heart attacks or bypass surgery averaged $739 lower after 21 months than those who received standard care––a net savings of $259 per patient over the cost of rehabilitation. If an additional 50 percent of Americans who have a heart attack or other cardiac episode received effective rehabilitation, the health system would save more than $310 million in hospital costs in two years.
  • Take PRIDE, a program developed at the University of Michigan School of Public Health, targeted people over 60 years old who used daily medication for a cardiovascular disease such as arrhythmia, angina, hypertension, or congestive heart failure. Half had experienced a heart attack, 30 percent had undergone surgery, and 20 percent had had angioplasty. The program consisted of four weekly small-group meetings that focused on identifying and solving patients' problems. A year after the program, participants reported that they had significantly fewer and less severe symptoms and that the symptoms they did have had less impact on their functioning. The program also increased the level of exercise among male participants.
  • Kaiser Permanente's MULTIFIT case management program for heart attack patients has been effective in reducing risk factors such as smoking, poor diet, and lack of exercise. Nurses who receive a week of special training provide information and monitoring for 150 to 175 high-risk patients at a time, at a total cost of about $500 per patient. In a Stanford University test group of 585 patients, cholesterol levels dropped, two months after their heart attacks, to levels that have been shown to reverse heart disease.
  • A self-help cardiac rehabilitation program in Edinburgh, Scotland, produced better psychological adaptation, fewer doctor visits, and fewer readmissions compared to a control group. The program consisted of six weekly sessions that included education, a home-based exercise program, and a relaxation and stress-management program. The manual explained self-help treatments for intrusive and distressing thoughts, anxiety, depression, undue illness behavior, panic disorder, and other psychological problems commonly experienced by people who have had heart attacks.

Investigators found that the most distressed patients had the greatest improvement, measured by less anxiety and depression. However, considering the low cost of the intervention, they argue that it should be given to all patients who have had a heart attack, not just those who are most distressed. ěTo restrict help to those clearly having problems would be to ignore those who are coping but who could cope even better with a little additional help,î they wrote.

Diabetes

Diabetes is the seventh leading underlying cause of death in the United States, according to the National Center for Health Statistics. It increases the risk of heart disease, stroke, blindness, kidney failure, and amputations. The Institute for Health and Aging calculated that the illness cost the nation $98 billion in 1997. Several studies have shown that patients with diabetes make up 3 percent of HMO populations but account for 13 to 20 percent of HMO costs.16 According to a study done by Kaiser Permanente of Northern California, per person expenditures for diabetic members were 2.4 times those of matched control subjects.

Type I diabetes mellitus, sometimes called insulin-dependent diabetes, can afflict both children and adults. Patients require daily injections of insulin and frequently develop eye damage that leads to blindness, kidney damage that leads to renal failure, and circulatory disease that leads to amputations and other problems.

Type II diabetes is typically associated with being overweight. Patients with Type II, about 90 percent of all persons with diabetes, have a less severe illness but develop the same types of complications. Patients with Type II diabetes are more at risk of heart attack than of blindness, kidney disease, or amputations; they have heart attacks at least twice as frequently as people who do not have diabetes.

The Diabetes Complications and Control Trial (DCCT), published in 1993, demonstrated unequivocally that for persons with Type I, frequent measurement and adjustment of blood sugar and insulin injections to normalize it considerably delay the onset of small vessel complications such as blindness and renal failure, compared to a control group taking a daily, fixed dose of insulin.

Important components of treatment for Type II diabetes are increased exercise, dietary control, and weight loss. For many patients, this alone is adequate treatment. All people with diabetes also need periodic eye exams and urine tests to prevent or delay the onset of blindness and renal failure. They also need to examine and care for their feet regularly to prevent complications that could require amputation. Finally, psychosocial stress can undermine diabetic control, either by direct physiological effect or by causing people with diabetes to stop monitoring and controlling their insulin.

The ětight controlî of the DCCT cost nearly $6,000 a year per patient, and the program accepted only highly motivated patients. However, many health care professionals who treat persons with diabetes believe that more modest interventions can also produce significant improvement, particularly for people with Type II diabetes.

For example, a combination of education and group support at the Oregon Research Institute produced weight loss and a drop in blood sugar in elderly persons with Type II diabetes. Neither effect was seen in control groups given only education (ten 60-minute classes by a dietitian) or group support (60-minute self-help group sessions).

Other researchers at the Oregon Research Institute used a touch-screen computer to help people with Type II diabetes identify where and why they eat fatty foods––for example, dining in restaurants or keeping such foods at home for other family members. A health educator helped the patients identify their goals and then followed up by telephone a few months later. As a result, patients lowered their average cholesterol count from 216 to 207, thereby reducing their risk of heart attack. Some experts suspect that the effect may have been derived from the personal care, not the use of the computer technology.

Several years ago the Maryland Medicaid program changed the way it pays for diabetes care. Doctors received a monthly payment for each patient with diabetes; in return, the physicians were to be available to talk with patients and refer them to special services. Patients who chose to enroll in the program had 40 percent fewer hospital admissions in 1993 and 50 percent fewer in 1994, compared to Medicaid recipients with diabetes who chose not to enroll. Enrollees also cut in half their risk of having to visit an emergency room during the two years of the program. This resulted in the reduction of annual expenditures by about $4,500 per person. Such figures must be interpreted cautiously, however, because enrollment was voluntary and the program probably attracted those most willing to try to take better care of themselves. According to Mary Stuart of the University of Maryland/Baltimore County, the diabetes initiative would have been easier to implement and less confusing to doctors if all health plans, not only Medicaid, had instituted it at the same time.

Arthritis

Arthritis is often––and mistakenly––thought to be a condition that afflicts only older people. Although osteoarthritis is more common among people over age 65, both rheumatoid arthritis, an inflammatory joint condition that is more prevalent in women and young people, and osteoarthritis, a degenerative condition whose incidence increases with age, account for considerable disability among working-age individuals. One study found that for people with rheumatoid arthritis, estimated earnings (using the U.S. Department of Labor job analysis) decreased from $18,409 to $13,900 per year. Furthermore, it was estimated that the number of jobs patients could perform dropped from 11.5 million to 2.6 million. The earnings losses were almost as great for patients with osteoarthritis. Overall, the Institute for Health and Aging calculated the direct and indirect costs of arthritis at $65 billion a year.

The principles for treatment of arthritis are not as well established as for the other chronic conditions discussed in this report. Richard Justman, national medical director for utilization management at United Health Care Corporation, points out that while his organization has standards for the treatment of asthma, diabetes, and heart disease, it doesnít have an arthritis management program ěbecause thereís no national consensus about the treatment of arthritis.î Nevertheless, many rheumatologists agree that:

  • management of osteoarthritis is aimed solely at reducing pain and disability, inasmuch as no treatment has been demonstrated to affect the progress of the condition
  • exercise and weight loss might slow the conditionís progress
  • treatment of the inflammation of rheumatoid arthritis probably helps prevent disability
  • the degree to which people with arthritis are disabled has as much to do with their ability to cope with their disability as with the amount of damage to their joints

A four-year study of northern California patients who had participated in a self-help program developed by Stanfordís Kate Lorig and disseminated through the Arthritis Foundation found that one group of patients reported 20 percent less pain and decreased their physician visits by 40 percent. Although objectively their condition continued to progress, the patients themselves had increased their activity and felt better able to manage their condition. Lorig and her colleagues reported that the average cost was $54 per person, and the net savings on physician visits was $648 per patient with rheumatoid arthritis and $189 per patient with osteoarthritis.

The self-help groups developed by Lorig have become so widely used that only a few other types of self-management support have been tried. One that has been is a home-study model that proved about as effective as small groups in improving knowledge about arthritis, self-care behavior, perceived self-efficacy, and pain. Jean Goeppinger and colleagues at the University of Virginia designed the individualized intervention as a correspondence course that includes an audiotape with standardized instructions and testimonials by persons with arthritis. The booklets were written at a sixth-grade reading level, using local terminology and acknowledging local customs, such as the importance of prayer in managing worries.

Lorig and her colleagues have since adapted the self-management support group model for use by people with different chronic conditions. A recent randomized trial of 952 participants found that over a six-month interval, this intervention resulted in fewer hospitalizations and hospital days, improvements in minutes of exercise, communication with physicians, self-reported health, disability, fatigue, and activities limitations.

Asthma

Although asthma is the leading serious chronic illness among children in the U.S., responsible for the most lost days of school (about 10 million a year), the condition also affects adults: The American Lung Association estimates that asthma accounts for 3 million lost workdays annually. Estimates of direct medical expenditures and indirect costs (in 1993 dollars) attributed to asthma total $12.6 billion.

Asthma is characterized by chronic inflammation of the bronchial tubes, even when the symptoms of respiratory difficulty are not present. Treatment consists of:

  • avoiding crises by treating the inflammation, usually by inhaling medications several times a day, even when the patient does not feel ill
  • treating acute crises with bronchodilator medications, also inhaled
  • monitoring the asthma, either with a peak flow meter or by clinical signs, so the medication dosage can be increased or decreased in order to avoid either under- or overtreatment

Beyond these interventions, however, emotional, behavioral (e.g., excitement or tension), and environmental factors (e.g., dust or pollen) can play an important role in triggering or exacerbating asthma attacks. According to Louis-Phillippe Boulet of Laval Hospital, Sainte-Foy, Quebec, writing in the journal Chest, ěConsensus documents have stressed the importance of patient education in controlling asthma by:

  • teaching patients how to manage asthma attacks when they occur
  • explaining the early signs of a severe attack so that patients can seek treatment when one occurs
  • ensuring that patients and their families recognize what environmental and emotional triggers exacerbate the asthma and avoid those triggers when possible.î

Because asthma affects people of all ages, a number of age-specific programs have been developed.

In the Wee Wheezers program, four small-group sessions of about two hours each were conducted to instruct parents of children under age 7 how to help their children manage asthma attacks, communicate with health professionals, and promote the psychosocial well-being of the family unit. The last two sessions included 45 minutes of direct instruction for children ages 4-6. On average, the children reported 0.9 fewer sick days and 5.8 more symptom-free days, and their parents reported 4.4 more nights of uninterrupted sleep during the month preceding the follow-up questionnaire. The program, which was developed by Sandra Wilson at the American Institutes for Research in Palo Alto, California, and colleagues in Minnesota, cost approximately $26 per child.

The Open Airways program of six one-hour monthly sessions instructed low-income parents of 310 urban children with asthma in the management steps to be taken by both the children and their parents. The program found that 44 percent of the parents lacked confidence in their ability to manage asthma attacks, believing they should instead take their children to the emergency room for all episodes, mild or severe.

Compared to a control group, Open Airways cut in half emergency room visits and hospitalizations for asthma among those who had been hospitalized the previous year, resulting in savings of $11.22 for every dollar spent––a total savings of $17,481. For the entire group, however, the cost of delivering the program exceeded the savings realized (62 cents saved for each dollar spent) because the 310 children included many who had not been hospitalized the previous year and thus had no hospitalization costs to reduce.

Adult patients with asthma learned self-management skills in seven 90-minute group sessions at Ohio University in Athens, Ohio. Participants were asked to keep a weekly record of peak flow rates and any attacks they experienced. They also kept a workbook to record information later used to calculate costs and benefits. At a program cost of $208 per patient, annual asthma-related costs for each patient were reduced an average of nearly $500 in the year following the program, primarily from reduced hospitalizations and work absences. The researchers have also adapted an individualized intervention for use in doctorsí offices.

Among these asthma interventions, the greatest medical cost savings resulted when high users of emergency rooms and hospitals were targeted. Such savings were insignificant or absent among those less severely hampered by asthma. However, such nonmedical benefits as fewer absences from school or work and higher productivity accrued to all patients.




What Purchasers Have Learned

As recently as five years ago, most purchasers of health care in both the private and public sectors rarely questioned the performance of the health plans they purchased. Today many are asking relevant questions about health care and are using information from such sources as the National Committee for Quality Assurance (NCQA), publisher of the Health Plan Employer Data Information Set (HEDIS), which measures health plan performance.

HEDIS is gradually collecting information, disease by disease, on the actual quality of care being delivered to patients. For example, it was found that less than 20 percent of heart attack patients in HMOs and other managed care organizations in the south central region of the U.S. received beta-blockers. Purchasers recognize that plans that yield such results are delivering far less care than they thought they were buying.

Arnold Milstein, medical director of the Pacific Business Group on Health, points out that ěemployers are also learning that health plans grossly under-appreciate patients themselves and their caregivers as sources of value that can improve health outcomes.î

Some purchasers are responding aggressively with intervention programs of their own. William McKee, executive director of Human Resources and Benefits at Western Resources, says that ěself-management needs to be a workplace topic as well, not just a health care issue. If you teach people prevention and self-care, you donít need to worry about costs.î

The DuPont Company, for example, has established health service teams consisting of nurses, health educators, employee assistance consultants, and, sometimes, a physician at each of its work sites. Employees receive on-site wellness appraisals once every three years. Those who are in a managed care network (about 90 percent of the workforce) and who have problems with high cholesterol levels, diabetes, hypertension, or obesity can visit a registered dietitian or certified diabetes educator eight times a year when referred by their physician. The company and its pharmacy benefits manager also invite diabetics into a program that offers a toll-free line staffed by diabetes specialists.

Many employers, however, are reluctant to provide support services that give workers the tools they need to self-manage their conditions. They believe this is best left to the health care industry. That, they reason, is why they contract with health plans. However, according to Milstein, ěIf it is demonstrated that such services will do good for employees, and they donít cost too much, they will support it.î

William Rosenberg of Coopers & Lybrand identifies three criteria purchasers use when they consider purchasing self-management support services for patients with chronic conditions:

  1. ěDo you have evidence that the service improves outcomes?î
  2. ěDo you have evidence that it improves patient satisfaction?î
  3. ěDo you have evidence that it reduces costs or the utilization of health services?î

But programs designed to improve patient self-management can accomplish little if patients do not participate in them. Enticing them to participate in prevention and self-management education initiatives may require incentives. For example, Western Resources, a $1.3 billion utility, offers a free infant car seat and eliminates copayment requirements for delivery of babies if the parent goes through prenatal care and training.

Insurers are also looking for benefits programs that encourage wellness instead of simply paying disability benefits to injured or ill employees and family members. Patricia Owens, president of Integrated Disability Management, a division of UNUM America, notes that ěthere are perverse incentives for staying out of workî when an employee is disabled. ěIncentives may be especially important for persons with chronic conditions,î she says, ěbecause they may be afraid to return to work when they have replacement income available in the form of a disability check.î One strategy Owens suggests to counter this is making participation in such services a condition of receiving continued disability payments.

Although the purchasing community is looking for such self-management services, Velvet Miller, until recently deputy commissioner of the New Jersey Department of Human Services, says that many believe they ěneed more quantitative proofî that such interventions do, in fact, deliver the results identified by Rosenberg: improved outcomes, improved patient satisfaction, and reduced costs and health care utilization. As this report makes clear, however, the evidence exists, and in greater abundance than for some biology-based health interventions for which purchasers routinely pay billions of dollars. What is lacking is ready access to such data. According to Owens, purchasers want to be able to ěshopî for prevention and self-management services in a directory of approved and proven models. Unfortunately, no such centralized clearinghouse of information on effective behavioral interventions yet exists.

Owens says purchasers also need an accreditation system that will assure that services are reliable, effective, readily available, and delivered by persons of proven competence. According to both Miller and Owens, such a system would also necessarily entail ongoing monitoring and evaluation.

Notes Miller, ěThere is such a wide variability of programs, we need continuing monitoring of contracts and a process of evaluation and accountability. One key to ensuring quality is to be very explicit in the health plan contract language about what these services will entail.î

The Commission on Accreditation of Rehabilitation Facilities (CARF) recently recognized the need to set standards for the delivery of self-management training services, particularly in rehabilitation settings. The first set of standards on these topics were designated ěStandards for Health Enhancement Programsî and released in January 1998.

The nationís major health care purchasers––its public and private employers, Medicare, Medicaid, and the Veteransí Administration––seem to have good reason to invest in their beneficiaries. Services that enhance patient self-management of chronic conditions can improve how they function, at work and at home, and reduce pain and suffering. In some cases these services can also reduce the direct costs of medical care by eliminating unnecessary and wasteful doctor and emergency room visits, hospitalizations, and medication use, and by reducing the costly consequences of poorly treated conditions.

Purchasers increasingly recognize that they must aggressively seek to ensure that health plans make such services available, but many are not yet convinced they can identify comprehensive health benefits that will improve health outcomes both efficiently and effectively.

Accreditation may help purchasers and payers develop confidence in self-management programs that demonstrably achieve the goals they set with their patients. Several of the people who contributed to this report met with colleagues who purchase health care or act on behalf of purchasers in the public and private sectors and with senior executives of two major accrediting organizations, CARF and the NCQA. Attendees agreed that accreditation standards that are based on appropriate principles would be of substantial assistance to patients, payers, and purchasers as they choose among competing programs for managing chronic illness. The most important of these principles, they said, are that self-management programs should:

  • provide services that support individuals in adopting behaviors that help them minimize symptoms and disability and maximize functioning, based on an assessment of strengths, needs, and risks
  • be based on the best available evidence of effective intervention
  • be a part of a long-term treatment plan mutually agreed upon by the individual (and family, as appropriate) and the health care provider
  • be embedded within or closely linked with the provision of primary care
  • be proactive within the limits of patient confidentiality. Patients should be contacted by providers of self-management services at regular intervals to discuss progress in self-management and to anticipate crises or decline.
  • provide ready referral to a variety of community-based services
  • collect data about cost, outcomes, and consumer satisfaction
  • reach out to the entire population to identify and engage those at risk

Moreover, a single set of standards developed and implemented by collaborating accrediting organizations could increase the likelihood of a consistent level of quality in programs, whether they are delivered by vendors, by freestanding rehabilitation organizations, or as fully integrated elements of health plans. Such standards could contribute to reassuring purchasers, payers, and the public of the value of self-managed chronic disease programs that are delivered in the context of strong and effective medical programs.




Notes

Introduction

C. Hoffman, D. Rice, and H.Y. Sung. 1996. Persons with Chronic Conditions. Journal of the American Medical Association 276:1473-9. [Return to text]

Intracorp. 1997. Personal Health: Whoís Taking Charge? Philadelphia, PA. [Return to text]

L. Norgaard. 1996. American Lung Association. Fresno, CA: personal communication. [Return to text]

Barriers

National Institutes of Health. 1995. Disease-Specific Estimates of Direct and Indirect Costs of Illness and NIH Support. Bethesda, MD: Office of the Director. [Return to text]

Bureau of Labor Statistics. 1997. Employee Tenure in the Mid-1990s. Washington, DC: USDL 97-25. U.S. Department of Labor. [Return to text]

American Association of Health Plans. 1996. The HMO and PPO Industry Profile. Washington, DC. [Return to text]

Self-Management of Chronic Illness

M. Von Korff, J. Gruman, J. Schaefer, S.J. Curry, and E.H. Wagner. 1997. Collaborative Management of Chronic Illness. Annals of Internal Medicine 127: 1097-1102. [Return to text]

Heart Disease

American Heart Association. 1998. (www.americanheart.org) [Return to text]

W. Linden, C. Stossel, and J. Maurice. 1996. Psychosocial Interventions for Patients with Coronary Artery Disease: A Meta-Analysis. Archives of Internal Medicine 156:745-52. [Return to text]

P.A. Ades, D. Huang, and S.O. Weaver. 1992. Cardiac Rehabilitation Participation Predicts Lower Rehospitalization Costs. American Heart Journal 123:916-21. [Return to text]

N.M. Clark, N.K. Janz, J.A. Dodge, and P.A. Sharpe. 1992. Self-Regulation of Health Behavior: The "Take PRIDE" Program. Health Education Quarterly 19:341-54. [Return to text]

R.F. DeBusk, N.H. Miller, H.R. Superko, et al. 1994. A Case-Management System for Coronary Risk Factor Modification after Acute Myocardial Infarction. Annals of Internal Medicine 120:721-9 (comments). [Return to text]

B. Lewin, I.H. Robertson, I.H. Cay, et al. 1992. Effects of Self-Help Post-Myocardial-Infarction Rehabilitation on Psychological Adjustment and Use of Heath Services. Lancet 339:1038-40. [Return to text]

Diabetes

D.L. Hayert and H.-C. Kung. 1997. Asian or Pacific Islander Mortality, Selected States, 1992. Monthly Vital Statistics Report 46(1; suppl.). [Return to text]

American Diabetes Association. 1998. Economic Consequences of Diabetes Mellitus in the US in 1997. Diabetes Care 21:296-309. [Return to text]

S.A. Smith. 1996. The Medical Outcomes Study. Journal of the American Medical Association 275:1084-5 (letter; comment). [Return to text]

J.V. Selby, G.T. Ray, D. Zhang, and C.J. Colby. 1997. Excess Costs of Medical Care for Patients with Diabetes in a Managed Care Population. Diabetes Care 20:1396-402. [Return to text]

Diabetes Control and Complications Trial Research Group. 1993. The Effect of Intensive Treatment of Diabetes on the Development and Progression of Long-Term Complications in Insulin-Dependent Diabetes Mellitus. New England Journal Medicine 329:977-86. [Return to text]

W. Wilson and C. Pratt. 1987. The Impact of Diabetes Education and Peer Support upon Weight and Glycemic Control of Elderly Persons with Noninsulin Dependent Diabetes Mellitus (NIDDM). American Journal of Public Health 77:634-5. [Return to text]

R.E. Glasgow, P.A. La Chance, D.J. Toobert, J. Brown, S.E. Hampson, and M.C. Riddle. 1997. Long-Term Effects and Costs of Brief Behavioural Dietary Intervention for Patients with Diabetes Delivered from the Medical Office. Patient Education and Counseling 32:175-84. [Return to text]

Center for Health Program Development and Management. 1995. State of Maryland Diabetes Care Program (DCP): An Independent Evaluation of the Waiver Granted to the Maryland Department of Health and Mental Hygiene under Sections 1915(b) (1) and (3) of the Social Security Act 1995. University of Maryland Baltimore, MD. [Return to text]

Arthritis

R.J. Kochevar, R.M. Kaplan, and M. Weisman. 1997. Financial and Career Losses Due to Rheumatoid Arthritis: A Pilot Study. Journal of Rheumatology 24:1527-30. [Return to text]

Arthritis Foundation. 1998. (www.arthritis.org) [Return to text]

K.R. Lorig, P.D. Mazonson, and HR. Holman. 1993. Evidence Suggesting that Health Education for Self-Management in Patients with Chronic Arthritis Has Sustained Health Benefits while Reducing Health Care Costs. Arthritis and Rheumatism 36:439-46. [Return to text]

J. Goeppinger, B.W. Arthur, A.J. Baglioni Jr., S.E. Brunk, and C.M. Brunner. 1989. A Reexamination of the Effectiveness of Self-Care Education for Persons with Arthritis. Arthritis and Rheumatism 32:706-16. [Return to text]

K. Lorig, D.S. Sobel, A.L. Stewart, et al. 1999. Evidence Suggesting That a Chronic Disease Self-Management Program Can Improve Health Status while Reducing Hospitalization. Medical Care 37:5-14. [Return to text]

Asthma

National Heart, Lung, and Blood Institute. 1996. Morbidity and Mortality: 1996 Chartbook on Cardiovascular, Lung, and Blood Diseases. Bethesda, MD: National Institutes of Health. [Return to text]

L.P. Boulet, K.R. Chapman, L.W. Green, and J.M. FitzGerald. 1994. Asthma Education. Chest 106:184S-196S. [Return to text]

S.R. Wilson, D. Latini, N.J. Starr, et al. 1996. Education of Parents of Infants and Very Young Children with asthma: A Developmental Evaluation of the Wee Wheezers Program. Asthma 33:239-54. [Return to text]

N.M. Clark, C.H. Feldman, D. Evans, et al. 1986. The Impact of Health Education on Frequency and Cost of Health Care Use by Low Income Children with Asthma. Journal of Allergy and Clinical Immunology 78:108-15. [Return to text]

H. Kotses, I.L. Bernstein, D.J. Bernstein, et al. 1995. A Self-Management Program for Adult Asthma. Part 1: Development and Evaluation. Journal of Allergy and Clinical Immunology 95:529-40.

H. Kotses H, C. Stout, K. McConnaughy, et al. 1996. Evaluation of Individualized Asthma Self-Management Programs. Journal of Asthma 33:113-6. [Return to text]

What Purchasers Have Learned

National Committee for Quality Assurance. 1997. The State of Managed Care Quality. Washington, DC. [Return to text]

K. Terry. 1995. Disease Management: Continuous Health-Care Improvement. Business and Health (April):64-72. [Return to text]




References

Ades, P.A., D. Huang, and S.O. Weaver. 1992. Cardiac Rehabilitation Participation Predicts Lower Rehospitalization Costs. American Heart Journal 123:916-21.

American Association of Health Plans. 1996. The HMO and PPO Industry Profile. Washington, DC.

American Diabetes Association. 1998. Economic Consequences of Diabetes Mellitus in the US in 1997. Diabetes Care 21:296-309.

American Heart Association. 1998. (www.americanheart.org)

Arthritis Foundation. 1998. (www.arthritis.org)

Boulet, L.P., K.R. Chapman, L.W. Green, and J.M. FitzGerald. 1994. Asthma Education. Chest 106:184S-196S.

Bureau of Labor Statistics. 1997. Employee Tenure in the Mid-1990s. Washington, DC: USDL 97-25. U.S. Department of Labor.

Center for Health Program Development and Management. 1995. State of Maryland Diabetes Care Program (DCP): An Independent Evaluation of the Waiver Granted to the Maryland Department of Health and Mental Hygiene under Sections 1915(b)(1) and (3) of the Social Security Act 1995. University of Maryland Baltimore, MD.

Clark, N.M., N.K. Janz, J.A. Dodge, and P.A. Sharpe. 1992. Self-Regulation of Health Behavior: The "Take PRIDE" Program. Health Education Quarterly 19:341-54.

Clark, N.M., C.H. Feldman, D. Evans, et al. 1986. The Impact of Health Education on Frequency and Cost of Health Care Use by Low Income Children with Asthma. Journal of Allergy and Clinical Immunology 78:108-15.

DeBusk, R.F., N.H. Miller, H.R. Superko, et al. 1994. A Case-Management System for Coronary Risk Factor Modification After Acute Myocardial Infarction. Annals of Internal Medicine 120:721-9 (comments).

Diabetes Control and Complications Trial Research Group. 1993. The Effect of Intensive Treatment of Diabetes on the Development and Progression of Long-Term Complications in Insulin-Dependent Mellitus. New England Journal of Medicine 329:977-86.

Glasgow, R.E., P.A. La Chance, D.J. Toobert, J. Brown, S.E. Hampson, and M.C. Riddle. 1997. Long-Term Effects and Costs of Brief Behavioural Dietary Intervention for Patients with Diabetes Delivered from the Medical Office. Patient Education and Counseling 32(3):175-84.

Goeppinger, J., B.W. Arthur, A.J. Baglioni Jr., S.E. Brunk, and C.M. Brunner. 1989. A Reexamination of the Effectiveness of Self-Care Education for Persons with Arthritis. Arthritis and Rheumatism 32:706-16.

Hayert, D.L., and H.-C. Kung. 1997. Asian or Pacific Islander Mortality, Selected States, 1992. Monthly Vital Statistics Report 46(1; suppl.).

Hoffman, C., D. Rice, and H.Y. Sung. 1996. Persons with Chronic Conditions. Journal of the American Medical Association 276:1473-9.

Intracorp. 1997. Personal Health: Whoís Taking Charge? Philadelphia, PA.

Kochevar, R.J., R.M. Kaplan, and M. Weisman. 1997. Financial and Career Losses Due to Rheumatoid Arthritis: A Pilot Study. Journal of Rheumatology 24:1527-30.

Kotses, H., C. Stout, K. McConnaughy, et al. 1996. Evaluation of Individualized Asthma Self-Management Programs. Journal of Asthma 33:113-6.

Kotses, H., I.L. Bernstein, D.J. Bernstein, et al. 1995. A Self-Management Program for Adult Asthma. Part 1: Development and Evaluation. Journal of Allergy and Clinical Immunology 95:529-40.

Lewin, B., I.H. Robertson, I.H. Cay, et al. 1992. Effects of Self-Help Post-Myocardial-Infarction Rehabilitation on Psychological Adjustment and Use of Health Services. Lancet 339:1038-40.

Linden, W., C. Stossel, and J. Maurice. 1996. Psychosocial Interventions for Patients with Coronary Artery Disease: A Meta-Analysis. Archives of Internal Medicine 156:745-52

Lorig, K.R., P.D. Mazonson, and H.R. Holman. 1993. Evidence Suggesting That Health Education for Self-Management in Patients with Chronic Arthritis Has Sustained Health Benefits while Reducing Health Care Costs. Arthritis and Rheumatism 36:439-46.

National Committee for Quality Assurance. 1997. The State of Managed Care Quality. Washington, DC.

National Heart, Lung, and Blood Institute. 1996. Morbidity and Mortality: 1996 Chartbook on Cardiovascular, Lung, and Blood Diseases. Bethesda, MD: National Institutes of Health.

National Institutes of Health. 1995. Disease-Specific Estimates of Direct and Indirect Costs of Illness and NIH Support. Bethesda, MD: Office of the Director.

Norgaard, L. American Lung Association, Fresno, CA: personal communication. February 1996.

Selby, J.V., G.T. Ray, D. Zhang, and C.J. Colby. 1997. Excess Costs of Medical Care for Patients with Diabetes in a Managed Care Population. Diabetes Care 20:1396-402.

Smith, S.A. 1996. The Medical Outcomes Study. Journal of the American Medical Association 275:1084-5 (letter; comment).

Terry, K. 1995. Disease Management: Continuous Health-Care Improvement. Business and Health (April):64-72.

Von Korff, M., J. Gruman, J. Schaefer, S.J. Curry, and E.H. Wagner. 1997. Collaborative Management of Chronic Illness. Annals of Internal Medicine 127:1097-1102.

Wilson, S.R., D. Latini, N.J. Starr, et al. 1996. Education of Parents of Infants and Very Young Children with Asthma: A Developmental Evaluation of the Wee Wheezers Program. Asthma 33:239-54.

Wilson, W., and C. Pratt. 1987. The Impact of Diabetes Education and Peer Support upon Weight and Glycemic Control of Elderly Persons with Noninsulin Dependent Diabetes Mellitus (NIDDM). American Journal of Public Health 77:634-5.




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