CONGRESS BRIEFED ON SELF MANAGEMENT OF CHRONIC ILLNESS RESEARCH
More than 45 percent of adults struggle with a chronic health condition that affects their daily activities. From diabetes to asthma, heart disease, depression, obesity, and AIDS, more and more Americans are living with chronic illnesses. More than 90 million Americans live with one or more chronic illness; at least 22 million live with three chronic illnesses. Coping with a complex chronic illness such as diabetes affects the individual as well as family members throughout the entire lifespan.
On March 12th, the Coalition for the Advancement of Health Through Behavioral and Social Science Research (CAHT-BSSR), along with the Decade of Behavior, the American Psychological Association, COSSA, the Federation of Behavioral, Psychological and Cognitive Sciences, and the Society for Research in Child Development, sponsored a congressional briefing to bring the need for additional research to help Americans effectively manage their chronic conditions to the attention of policymakers. Three distinguished social and behavioral scientists, Jacqueline Dunbar-Jacob, James Hill, and Dana Goldman, discussed the current scientific knowledge about self-management and directions for research that have the potential to improve the ability of people to manage and enhance their health.
Dana Goldman, Virginia Cain, James Hill, Jackie Dunbar-Jacob
Virginia Cain, Acting Director of the National Institutes of Health (NIH) Office of Behavioral and Social Sciences Research (OBSSR) served as the event’s moderator. She informed the audience of Congressional staff, NIH officials, and scientific community representatives that the issue of self management is becoming critically important. We are seeing more and more cases of chronic disease, Cain explained, that are not readily fixed and require ongoing management by the patient. This includes issues surrounding adherence to the medical regimen, including medication regulation and/or behavioral intervention, frequently both, she noted. Genetic progress, Cain pointed out, does not explain everything; individual behavior and the environment can affect outcome. She underscored the fact that later disease states have routes in early behavior.
Accordingly, in its FY 2005 budget proposal, NIH noted its intention to increase the agency’s focus on chronic disease, which, NIH stressed, has overtaken acute conditions as the nation’s leading killers.
Complexity of Regimen Management
Jacqueline Dunbar-Jacob, University of Pittsburgh, began the discussion by highlighting some of the difficulty individuals have in managing their chronic conditions in a presentation entitled Taking Control of Our Health – The Complexity of Regimen Management in Chronic Illness. She defined chronic disorders as “permanent or ongoing conditions requiring long periods of observation and management.” Such conditions include: heart disease, arthritis (the most common), diabetes, cancer, chronic obstructive pulmonary disease, asthma, obesity, and HIV/AIDS, she noted.
According to Dunbar-Jacob, chronic conditions are experienced by approximately 45 percent of Americans; 24.6 percent of children under age 18, 35.1 percent of young adults (18-44), 67.7 mid-life adults (45- 64), and 87.6 of adults 65 years of age or older. Clearly, it is a major problem for the country and health care, she asserted.
Dunbar-Jacob explained that the goals of treatment are to (1) slow the progression of the disease; (2) prevent complications; (3) maintain function; and (4) sustain the quality of life “so that individuals can work and manage their own lives in their own homes.” These conditions are managed through medication, physical activity, dietary modification, and other lifestyle adjustments.
She observed, however, that any one chronic condition requires management of several regimens and used high blood pressure as an example. An individual with high blood pressure, Dunbar-Jacob observed, needs to take one or two medications, maintain a salt-controlled diet, perform regular physical activity, and monitor their blood pressure. At least 22 percent of Americans have two or more chronic conditions, she noted. For instance, according to Dunbar-Jacob, diabetes is often accompanied by high blood pressure, high cholesterol, obesity/overweight, vision impairment, or arthritis, each with its own regimen.
Clinical support for regimen management for individuals with chronic disease averages only about one hour of health system contact per year, spread out over three visits. Accordingly, after being diagnosed and given prescriptive advice, with episodic monitoring, patients must perform the day-to-day management of their own regimen and disease(s) themselves, she explained.
How successful is this partnership in managing chronic disease? Only 30 percent of persons with high blood pressure are controlled, a mere 28 percent of persons with diabetes are controlled and approximately 39 percent of individuals are of a desirable weight. Conversely, specific modifiable behavioral factors account for: 70 percent of stroke, 70 percent of colon cancer, 80 percent of coronary heart disease, and 90 percent of adult onset diabetes.
Contributions to poor regimen management include: errors in managing symptoms or side effects; errors in carrying out the regimen, both intentional and unintentional; belief about disease and/or treatment; tired of carrying out regimen; inadequate education and/or clinical support; and a lack of awareness/monitoring of behavior, explained Dunbar-Jacobs. Behavioral errors, meanwhile, include: failure to adopt the regimen, early stoppage of treatment, reduction in levels of treatment, over treatment, variability in the conduct of treatment, “dosage” interval errors, performance errors, and management of symptoms, she further explained.
To improve this picture, Dunbar-Jacob stressed the need for intervention research, behavioral assessment research (self-monitoring), and recognition of the factors that contribute to successful self-management. “We need to develop and evaluate self-monitoring technologies that are accurate, provide feedback, and are portable and easy to use,” she stressed. She also called for an examination of factors that contribute to effective self-management, noting that most studies have relied on self-report of behavior. “We are unlikely to change these data until we learn how to promote self-management capabilities among patients,” Dunbar-Jacob concluded.
Self Management and Health Disparities
According to Dana Goldman, RAND, Inc., there are large differences in health outcomes by socioeconomic status (SES) that cannot be explained fully by traditional arguments such as access to care and poor health behaviors. Goldman hypothesized that there are health benefits to having a college degree. Discussing his research, which examined differences by education in treatment adherence among patients with diabetes and HIV, Goldman noted that for both illnesses he found that significant effects of adherence are much stronger among patients of higher SES.
Echoing Dunbar-Jacob, Goldman noted that there are a lot of new treatments available and they are complicated. “Treatment regimens often require high quality and persistent self-management on a daily basis, and not all patients are equally adept at complying,” he continued. Compliance requires an understanding of the medical necessity and an ability to select the most appropriate regimens, he explained. It also requires “a willingness to internalize the future costs of incomplete compliance,” Goldman said.
He noted that HIV provided a good test of his hypothesis. Highly active antiretroviral therapy is complicated and often involves over two dozen pills daily. In addition, medications must be carefully synchronized with meals and each other. “It is a pernicious regimen,” he explained. If you do not adhere and are using such therapy as highly active anti-retroviral therapy, given the biological nature of the disease you are actually making your health worse, Goldman emphasized. The better educated adhere to treatment, explained Goldman. Education matters as much as race and sex for HIV adherence, he emphasized, noting that adherence explains health outcomes among HIV survivors.
Diabetes, he noted, is the prototype chronic illness. It is very hard to manage. Tight glycemic control is the key to better outcomes for both Type 1 and Type 2 diabetes, he explained. It requires patients to continually monitor levels of glucose-medication titration. When it came to taking their diabetes medication, Goldman found that the less educated switched both oral medications and insulin more.
Summarizing his findings from the Health and Retirement Survey (HRS), supported by the National Institute on Aging, Goldman stated his research shows that the better educated are more likely to maintain high quality treatment and high quality treatment leads to improved general health.
The findings of the research suggest several explanations for why education matters, Goldman noted. Good adherence to a treatment regimen requires several attributes that may be strongly related to education, including complying with physician orders through comprehending what is being prescribed and adjusting the daily routine to execute it. The results also suggest differential health outcomes across SES levels because of different abilities to self-manage a demanding behavioral regimen are amenable. “Less educated patients would benefit more from frequent follow-ups, simpler drug regimens, and clear instructions about how to comply and the consequence of noncompliance,” Goldman asserted.
Goldman concluded by emphasizing that the study demonstrates that SES disparities can be altered through clinical intervention. Intensive monitoring, he stressed, is more valuable for the less-educated.
Our Most Serious Public Health Problem
According to James O. Hill, University of Colorado Health Sciences Center, 75 percent of Americans will be overweight or obese if the current trend in obesity continues through 2008. If those trends continued further, all Americans will be obese in 2040, Hill joked. Hill cautioned that children are not immune to overweight/obesity. Approximately 15 percent of kids are overweight/obese and that may be an under estimation, warned Hill.
Obesity is related to the diseases we die from, Hill observed. There are problems reversing the trend because of the complexity of the disease. It is one of the most complex things we have ever dealt with, he underscored. It is an issue that crosses disciplines: biology, economics, sociology, and city planning. A lot of people, however, are hung up in the complexity, he continued. He cautioned that we cannot concentrate on individual behavior or environment alone.
Sixty percent of Americans get no physical activity. Today’s sedentary lifestyle is totally wrong for the environment. We are using our heads instead of our physiology, Hill explained – we have the right biology for a different environment. We have taken the physical activity out of work and can go about the act of daily living without any physical activity. We have more leisure time; we spend more time in front of the HDTV. Change is hard to do in this environment, Hill emphasized.
We are not going to fix the obesity problem in the U.S. by the next election, he warned. We have to come up with a logical plan and set specific behavior goals. Hill stressed the need for individuals to manage their weight like they manage their finances. We can get behavior change, he noted, but is difficult to sustain. We also have to change the environment to support and sustain these goals, Hill continued.
He cited several relative successful Federal campaigns as examples of what is needed, all of which had very specific behavioral goals. To lower the number of deaths in car accidents, we promoted the use of seat belts; to address suboptimal infant nutrition, we encouraged mothers to breast feed; to limit the negative consequences of tobacco use, we told individuals not to smoke; and to prevent the negative environmental impact of waste, we implemented recycling programs, noted Hill.
We do not have a comparable solution to combat the negative consequences of obesity, lamented Hill. He noted that Healthy People 2010 contains two goals: (1) to reduce obesity to 15 percent and (2) to reduce childhood obesity to 5 percent. “What Healthy People 2010 does not have incorporated in it is how to do this,” explained Hill. We don’t have the solution, Hill asserted. We have to come to better agreement on what change is needed, he explained.
‘Prevention is Doable’
There are huge benefits to a 5-10 percent weight loss, said Hill. What we have to do first is to prevent weight gain. “Prevention is doable,” Hill insisted.
He cited his America on the Move program, based on research supported by the NIH, as an example of how to exact change. We have to start where people are and make small changes. Through the program, Hill and his colleagues test the hypothesis that small lifestyle changes can be achieved and sustained and can prevent weight gain. He forewarned, however, that the program has not been successful in producing and sustaining large lifestyle changes.
America on the Move inspires people to make small changes to stop weight gain. He shared that most weight gain is caused by less than 100 excess calories per day. Accordingly, most weight gain can be prevented by modifying energy balance by this amount. This includes increasing walking by 2000 steps per day and choosing one behavior each day to eliminate 100 calories. Individuals continue to make more small changes by making incremental changes in walking and improving diet quality. The program also provides programs for target populations to reinforce the simple change messages. It creates a grassroots initiative to get Americans excited about taking control of their weight, Hill explained.
The program can be tailored for individuals, schools, worksites, churches and other organizations, families, health care professionals, and communities, said Hill. The long term goal of the program is to work to change the environment and teach our children the skills they need to manage their weight in the current environment, which include skills in energy balance, skills learned in school, and skills reinforced in the “real world” of restaurants and grocery stores.
America on the Move works, emphasized Hill, because it focuses on the consumer and inspires change. It is simple and fun. It is about energy balance. It advocates small changes; people can actually do what is recommended. It starts where people are right now. It provides a starting point we can live with – stopping weight gain, he explained. For more information about American on the Move see: Americaonthemove.org