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National Center for Chronic Disease Prevention and Health Promotion
Chronic Disease Prevention
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National Center for Chronic Disease Prevention and Health Promotion Chronic Disease Prevention Home | Contact Us |
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CENTERS FOR
DISEASE CONTROL AND PREVENTION Special Focus: Health-Related Quality of Life, Part I Health-Related Quality of Life Reveals Full Impact of Chronic Diseases Interest in health-related quality of life (HRQOL) is soaring because Americans are living longer and want to stay healthy and active for as long as possible. As CDC epidemiologists and behavioral scientists learn more about quality of life, their findings offer hope to people with heart disease, arthritis, diabetes, and other painful, debilitating conditions. Heart Disease and
Stroke CDC’s quality of life research focuses on all aspects of cardiovascular disease—how it affects a person’s ability to work and perform activities of daily living and how quality of life is affected by the cost and side effects of medications; affordability of care; access to good care; and caregiver and family issues. “We see it as not just the condition but everything that’s associated with it,” explained Kurt J. Greenlund, PhD, a CDC epidemiologist specializing in cardiovascular health. People who have had a heart attack or stroke tend to report fewer healthy days than people who haven’t had such an event, according to Dr. Greenlund. Even people who have not had a heart attack or stroke but have risk factors—high blood pressure, high blood cholesterol, tobacco use, obesity, and diabetes—tend to report fewer healthy days than others, he added. Thankfully, the devastating effects of cardiovascular disease can be averted, Dr. Mensah said. The first step is to let people know what they can do to reduce their risk—for example, regularly check and control their blood pressure and blood cholesterol, avoid using tobacco, exercise regularly, and eat nutritious foods. “Few people realize that even when they do all the right things, they may still be at risk for heart disease and stroke,” cautioned Dr. Mensah. “Public health agencies must get the message out about what to do if you develop chest pains. People from all walks of life must understand the need to call 9-1-1 right away and get to the emergency room as soon as possible.” By arriving at a hospital within 1 hour after chest pains begin, a person can get appropriate medical treatment, such as the use of the clot buster, a drug that can actually prevent a heart attack or stroke, he explained. Receiving this drug in a timely manner can significantly improve quality of life. People can safeguard their quality of life by making healthy lifestyle choices, but even more can be done through policies and environments that support healthy behaviors and promote quality of life for entire communities, Dr. Mensah noted. For example, some, but not all, communities have enhanced 9-1-1 emergency medical transport services as well as fire stations and pharmacies that offer free blood pressure checks, health fairs where free cholesterol screenings are available, walking trails, no-smoking policies, smoking cessation services, and accessible grocery stores stocked with fresh, affordable fruits and vegetables. Large, population-based efforts such as these are much more effective than just telling a person to stop smoking, to eat fresh fruits and vegetables, or to exercise, Dr. Mensah said.
To increase people’s knowledge about these health issues and promote behavior changes, public health agencies must use aggressive communication strategies to get the word out that such services can make a big difference in the quality of people’s lives. “A very well-informed, educated public can be a strong stimulus and a powerful catalyst for promoting the policy and environmental changes that we, in public health, know can improve quality of life,” Dr. Mensah said. “For far too long now, we’ve blamed individuals, many who lacked the basic knowledge and access to services needed to make healthy lifestyle choices. Now we need to promote policy and environmental changes to help people lead heart-healthy lives.” |
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Arthritis Nearly 70 million U.S. adults have arthritis or chronic joint symptoms— pain, aching, stiffness, or swelling in or around their joints. For people with arthritis, quality of life issues such as pain and loss of function are far more relevant than death because arthritis rarely kills. “Although some types of arthritis can cause death, that outcome is dwarfed by the huge impact arthritis has on outcomes like pain and function—an impact that makes arthritis the leading cause of disability in the United States,” said Charles G. Helmick, MD, a medical epidemiologist with CDC’s arthritis program.
“We’ve analyzed Behavioral Risk Factor Surveillance System data from 15 states and Puerto Rico. It’s what you might expect: People with arthritis have worse health-related quality of life than those without arthritis. In fact, they’re doing much worse,” said Dr. Helmick. These findings are guiding CDC’s future research questions. “We’re now asking: Why is this happening? Is it pain? Is it loss of function? Is it comorbidity—arthritis combined with diabetes, for example?” Dr. Helmick and his colleagues also have identified several groups of people who are hurt the most by arthritis: people aged 45–64 years, blacks and Hispanics, and adults with less than a high school education. Again, CDC researchers want to find out why. “It could be physician issues. Or it could be related to differences in social support, education, or self-efficacy—the belief that you can do the things required to manage your disease,” Dr. Helmick explained. Many older people with arthritis think the pain and loss of function is just a natural part of aging and do not realize that their quality of life is slowly eroding, noted James S. Marks, MD, MPH, Director of CDC’s National Center for Chronic Disease Prevention and Health Promotion. “They’ve made accommodations for the disease. Perhaps they don’t take walks in the neighborhood anymore,” he explained. “And yet probably more could be done to help these people feel better and maintain their function.”
Diabetes Then comes the stress and frustration of having to manage the disease. “Rather than play golf, you have to go to the doctor,” Dr. Narayan said. “You must deal with daily self-management of this disease. Diabetes alters your diet. You must take lifelong medication.” Even more devastating are the complications that diabetes can cause: blindness, kidney disease, heart disease, circulatory problems that can result in amputation, and cognitive decline.
To help people with diabetes, CDC has supported three National Institutes of Health (NIH) studies that address quality of life: the Diabetes Prevention Program clinical trial, the Look Ahead study of weight loss, and the Action to Control Cardiovascular Risk in Diabetes (ACCORD) study, which looked at the effects of reducing cardiovascular disease risk among people with diabetes. In addition, CDC is the lead agency for the Translating Research Into Action for Diabetes (TRIAD) study, which involves NIH and the Veterans Administration (VA). Participants include 12,500 people with diabetes plus 2,000 people in VA hospitals. The study aims to identify the barriers that block people from getting currently available treatment for the complications of diabetes. In each of these studies, CDC has promoted quality of life—“first, because it is important to know how diabetes affects quality of life and secondly, because it’s a matter of economics,” said Dr. Narayan. “Very few medical treatments save money, so we’ve asked: Are we improving quality of life? For every dollar spent, what will give you more quality-adjusted life years (QALYs)? It’s not about saving money,” he said. “It’s about spending money wisely, getting the best in return for your investment.”
"The earliest diabetes studies focused on mortality, asking ‘Does treatment prevent death?’ Then the studies moved to morbidity, asking ‘Does treatment prevent complications?’ Now the focus is on quality of life, and we’re asking, ‘How does the person perceive quality of life?’ The newest area of study is patient satisfaction,” Dr. Narayan noted. Quality of life has not always been a high priority in public health, but that is changing. “We are moving in the right direction,” he said. Epilepsy “Epilepsy is not just a chronic disorder. It remains a social label, and it limits people’s independence,” said Rosemarie Kobau, MPH, a public health analyst with CDC’s epilepsy program. Not being able to drive is one of the biggest limitations. “Most states allow people with epilepsy to drive if they have been seizure-free for a year, but they have difficulty getting auto insurance, and so they’re trapped,” Ms. Kobau said. “For people with no access to public transportation, that can lead to unemployment, financial hardship, and social isolation.” Despite legal protections, people with epilepsy still find that they are denied coverage for health and life insurance, and people are reluctant to tell potential employers that they have epilepsy. “There is a lot of work to do to educate the public about epilepsy,” she added.
The drugs used to control epilepsy can also wreak havoc on a person’s quality of life. “A person with epilepsy might have only one or two seizures a year but take drugs year-round. The medications often slow down your brain function, causing confusion, drowsiness, and lethargy,” Ms. Kobau explained. These side effects can lead to other problems that affect quality of life. Women with epilepsy face unique challenges when planning for pregnancy. Although most babies born to women with epilepsy are normal and healthy, the disorder and epilepsy medications can pose health risks for pregnant women and their babies. In a recent study, researchers found that health care professionals had little knowledge and much uncertainty about how to care for women with epilepsy. In response, the Epilepsy Foundation has launched an initiative to educate health care professionals about women with epilepsy. Epilepsy’s effects on quality of life also vary by age. The consequences for very young children are very different from those for older adults. Many older people develop epilepsy after having a stroke or head injury. “Imagine that you’re 62, still work, and can drive. Then all of a sudden, after you develop epilepsy, you’re told you can’t drive anymore,” said Ms. Kobau. “Your world has suddenly gotten smaller.” The good news is that people with well-controlled epilepsy have the same quality of life as people without epilepsy, surveys have shown. “So it’s important to strive for good seizure control whether it’s through new medicines, better treatments, or more effective self-management of the disorder,” Ms. Kobau said. The goal of CDC’s epilepsy program is to improve people’s quality of life through early detection and treatment of epilepsy, self-management of the disorder, increased knowledge about epilepsy, and strategies to combat stigma. Epilepsy affects so many aspects of a person’s life, Ms. Kobau said, and “health-related quality of life captures the full impact of this disorder on life.” Cancer Whether caused by cancer or chemotherapy, side effects such as pain, fatigue, depression, anemia, impotence, loss of appetite, and inability to taste or smell can be devastating. Recent research has shown that simple steps—such as enhancing the flavor of foods and providing adequate pain control—can significantly improve cancer patients’ quality of life. Cancer patients with no pain or only mild pain tend to report much better health and well-being than those with moderate or severe pain. Studies also have shown that doctors often do not provide adequate medication to alleviate the pain experienced by people who are dying of cancer. In CDC-funded research, investigators are studying the palliative care and pain management provided in the last 6 months of life to men with prostate cancer and women with ovarian cancer. “There are times when these people are not going to have their life lengthened dramatically, and we’re not making them as comfortable as we can,” Dr. Marks said. “These are quality of life issues that are starting to get increasing attention in the cancer community.” Mental Health
“The question now is what do we do, not just to treat mental illness but to improve mental health?” Dr. Marks noted. “Can we diagnose and treat mental illness early? We have to recognize mental health as an area of public health that we in chronic disease will have to engage in. Most mental health issues are less about risk of death and more about quality of life, and they’re often related to chronic diseases.” Mental health and chronic disease are intertwined and can trigger one another. “For example, when you learn you have diabetes, you get depressed about it. And that depression makes it harder for you to manage the lifestyle changes you need to make. There’s increasingly good evidence that depression—not necessarily diagnosed, but depressive feelings—raises the risk of having a heart attack. For people who’ve had a heart attack, it clearly increases their risk for a subsequent attack. So quality of life affects many illnesses,” Dr. Marks explained. In addition, people with mental illness are more likely to have chronic illness. And if they have a chronic disease, they do not seem to do as well in managing their illness. Health-related quality of life studies also have linked depression to unhealthy behaviors such as smoking and physical inactivity. “A lot of people continue to smoke because they get depressed when they quit, and people with schizophrenia or depression tend to smoke more than others,” said CDC medical epidemiologist Matthew M. Zack, MD, MPH. “People who become more physically active tend to experience better HRQOL. We don’t know what comes first.” Regardless of whether healthy behaviors lead to improved quality of life or vice versa, “when developing interventions, we need to take these mental health and HRQOL factors into account,” Dr. Zack suggested. The result could be better patient compliance, lower rates of relapse, and a better quality of life. From a physician’s point of view, health-related quality of life opens the door to better relationships with patients and better outcomes. In the past, physicians have been taught to rely more on laboratory data and less on what their patients say. “More and more, health-related quality of life will mean listening to how patients feel about their physical and mental health,” said Dr. Zack. “When you listen, the patient comes to trust you, and you might find out a lot of useful things—like whether or not he’s taking his medications. You’re more likely to find out what’s happening, the whole story.”
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Privacy
Policy | Accessibility This page last reviewed August 10, 2004 United
States Department of Health and Human Services |
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