On average, people with one chronic condition see three different physicians and fill seven prescriptions a year, according to Partnership for Solutions, a research group at Johns Hopkins University in Baltimore. People with five or more chronic conditions make 12 physician visits and fill 50 prescriptions a year.
Nearly half of all adults in America live with at least one chronic disease.
Even with all that care, patients with chronic illnesses are among the sickest members of society. A 2009 National Council on Aging (NCOA) survey found that 32 percent of people 44 and over who have one or more chronic illnesses are living in pain, 65 percent are stressed, and 50 percent are depressed.
"The present medical model has ignored many of the issues—pain, fatigue, anger—that interfere with people's lives," says Nancy Whitelaw, Ph.D., NCOA senior vice president. "Until our care system focuses on improved health for people with chronic conditions, we will never get a handle on skyrocketing costs."
These medical realities are well known to Kate Lorig, a nurse and professor at Stanford University School of Medicine, whose own chronic disease led her to look for a solution. Born with Gaucher disease, a genetic disorder with no cure (or treatment, until 15 years ago), Lorig was deficient in an enzyme that breaks down certain fatty acids. She bruised easily and had exhausting anemia; most sports were off-limits, for fear her enlarged spleen would rupture.
Lorig saw countless doctors throughout her life, but she refused to let her disease curtail her ambitions. After joining the Peace Corps—she served in Chile as a public health nurse—Lorig completed her doctor of public health degree at the University of California, Berkeley. She then embarked on her life's work: finding a way to help chronic-disease sufferers better manage their conditions.
In 1991 Lorig and a team of Stanford researchers set out to develop a results-oriented self-management program that would improve the quality of life for people with chronic conditions. The team started by organizing focus groups for more than 100 people with ongoing illnesses in northern California. Each participant was asked a simple question: "What are your disease-related problems?" Although their illnesses varied, they shared some common symptoms (fatigue, fear, depression) and had similar lifestyle issues (poor diet, lack of exercise, smoking) that were interfering with their health.
Over the next six months Lorig and her team tackled complex issues about nutrition, physical activity, and cognitive reasoning, and narrowed them down to simple yet effective messages. "Patients often leave the doctor's office glassy-eyed because they get a hundred messages about what they should or should not be doing," explains Lorig. "We narrowed it down to the three or four things that are most important."
For instance, many patients with chronic illnesses are told to exercise. But for someone with a sedentary lifestyle, just starting out can be daunting. Lorig's team designed a different exercise prescription: start by doing what you can now, even if it's only walking a block. Do that four or five times a week, then add one or two minutes each week. "If patients believe they can do something, they'll do it," Lorig notes. "If not, they won't."
Another crucial element of the program is learning how to communicate with doctors. "Depending on their generation, some people are afraid to ask questions," explains Lorig. "They hide their symptoms because they don't want to ' bother' their doctor."