Congressional Briefing on Self-Management of Chronic Illness

Nearly half of all adults must manage at least one chronic health condition that affects their daily activities. These conditions, including diabetes, asthma, arthritis, obesity, depression and others, affect more than 90 million Americans now, and the numbers will climb as the population ages.

Nearly half of all adults must manage at least one chronic health condition that affects their daily activities. These conditions, including diabetes, asthma, arthritis, obesity, depression and others, affect more than 90 million Americans now, and the numbers will climb as the population ages. Research on self-management, funded by the National Institutes of Health, can improve knowledge about what patients, families and health care providers can do to improve health and quality of life.

The Decade of Behavior, along with the Coalition for the Advancement of Health Through Behavioral and Social Sciences Research (co-chaired by staff from APA and the Consortium of Social Science Associations) and its member organizations, sponsored a congressional briefing on March 12, 2004. Three senior researchers spoke to congressional and agency staff in the Rayburn House Office Building on Capitol Hill. The speakers were psychologists Jacqueline Dunbar-Jacob, PhD, RN, Dean of the University of Pittsburgh School of Nursing , James O. Hill, PhD, of the University of Colorado Health Sciences Center; and health economist Dana Goldman, PhD, of RAND. Virginia Cain, PhD, Acting Director of the NIH Office of Behavioral and Social Sciences Research, moderated the briefing.

Dr. Dunbar-Jacob gave an overview of the difficulties people might encounter managing their chronic conditions, including communicating with health providers and adhering to treatment regimens such as diet, exercise, or medication schedules. Most people with chronic conditions have only one hour of contact per year with their health care providers (spread over multiple visits). She discussed the need for better intervention studies to develop self-monitoring technologies that provide accurate feedback, and are portable, to help people manage their conditions more effectively. Dr. Dunbar-Jacob commented that most studies rely on self-report, which may be inaccurate for the recall of multiple behaviors over time.

Dr. Hill discussed the problem of increasing rates of obesity and overweight. He commented that 60 percent of Americans get no physical activity. Most physical activity has been engineered out of modern human environments at the same time that food has become easier and cheaper to obtain. Most weight is gained because people consume as little as 100 calories per day more than they burn. As one strategy to fight obesity, Dr. Hill promoted a program he established called America on the Move, which encourages people to take small steps to prevent weight gain.

Dr. Goldman discussed health disparities in successful management of chronic conditions, including HIV/AIDS and diabetes. Differences in health outcomes by socioeconomic status cannot be completely explained by access to care and poor health behaviors. Dr. Goldman's research has examined the differences by education in treatment adherence among patients with diabetes and HIV. His research has shown that patients of higher SES are more adherent. He hypothesized several reasons why education matters. Good adherence to a treatment regimen requires comprehending what is being prescribed and adjusting the daily routine to achieve compliance. He suggested that less educated patients would benefit from more frequent follow-ups, simpler drug regimens and clear instructions about how to comply and consequences of non-compliance-for example, exactly what should be done if the patient should miss a dose of medication. Dr. Goldman emphasized that this type of intervention could wipe out the effect of lower education.

Dr. Cain explained that the NIH Office of Behavioral and Social Science Research has encouraged research on self-management since it is a topic common to the mission of many NIH institutes and relevant to many conditions.