CENTERS FOR DISEASE CONTROL AND PREVENTION
Volume 16 • Number 2/3 • Winter/Spring/Summer 2004

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Missouri

Leading the Way in Testing and Using HRQOL Measures

When questions about health-related quality of life (HRQOL) were first added to CDC’s Behavioral Risk Factor Surveillance System (BRFSS) in 1993, Missouri lived up to its reputation as the “show me” state. The state BRFSS coordinator was very skeptical that people would stay on the phone if you asked them right up front about their mental health. So state officials put the HRQOL questions later in the survey the first year. The next year, they put the questions back at the front of the survey like the other states. Then they compared the responses for the 2 years and did not find significant differences. CDC benefited from that experiment.

The four core HRQOL questions ask people to rate their general health and estimate how many days in the past 30 they have experienced poor physical health, poor mental health, or limitations in their usual activities.

Besides helping to prove that people will answer questions about their mental health at the beginning of a survey, Missouri has played an integral part in helping CDC develop, test, and promote the HRQOL measures. The productive relationships between the state’s health department, universities, and Prevention Research Center are a model for other states.

Missouri Offers Skills, Motivation, and Vision
Before the core HRQOL questions were added to the BRFSS, Missouri’s state coordinator, Jeannette Jackson-Thompson, MSPH, PhD, offered to pilot test them in a 1992 county survey. The results gave CDC its first real HRQOL data and marked the first community use of these measures anywhere in the country. Since then, Missouri researchers have used HRQOL data in several studies, focusing on topics such as arthritis, disability, and unmet service needs in elderly populations. They also have helped test and prove the measures’ validity and reliability. In 1994, they pilot tested CDC’s optional quality of life module, which asks additional questions on activity limitation and symptoms of pain, depression, anxiety, sleeplessness, and vitality.

Missouri’s seven Regional Arthritis Centers (RACs) support individuals and families affected by arthritis. For more information, visit http://www.muhealth.org/~arthritis/ractp.html.*

The Missouri researchers were instrumental in helping CDC refine the questions. They have also been a close partner in developing, validating, and applying the HRQOL measures. They are among the leaders of the state health departments in terms of their ability to analyze survey data.

David Moriarty, a CDC program analyst, also credits the state health department with “leadership and skills at the top and a vision of how these measures and the resulting data can be used for population health assessment and surveillance.” In 1994, CDC asked Missouri officials to help develop and pilot test an optional arthritis module because it was the only state routinely collecting arthritis data on its BRFSS survey (Arizona and Ohio collected data periodically). Arthritis is the leading cause of disability in the United States and contributes significantly to poor HRQOL.

Missouri also was the first state to establish a statewide arthritis program. Today, it boasts seven Regional Arthritis Centers (RACs) that offer arthritis-related education, resources, and intervention services such as self-help courses and exercise classes geared toward people with arthritis (see map, above).

“The RACs are a huge part of our program, and they represent how we’re responding to the needs of our population based on the data that have been collected,” said Beth Richards, manager of the Arthritis and Osteoporosis Program in the Missouri Department of Health and Senior Services (DHSS).

In Missouri, about one in three adults have arthritis, and nearly half report joint pain, stiffness, or swelling, according to the 2001 Missouri BRFSS. Arthritis and its related activity limitations contribute significantly to mental distress and poor perceived health, and people with arthritis report a higher prevalence of other chronic diseases such as asthma, cardiovascular disease, diabetes, and osteoporosis.

Maintaining appropriate weight, seeking early treatment, and participating in self-management courses can reduce the impact of arthritis and improve the quality of life of people with the disease. Unfortunately, many people don’t know that they can prevent or offset the effects of arthritis or that help is available.

“Ten years ago, the message was, if you have arthritis, you really can’t do anything about it,” Ms. Richards said. “The leaders in the RACs are still struggling to convince people that physical exercise is definitely going to help them. The quality of life data are important because they will help us know where to go with this message and how to target people who are not taking advantage of the available resources.”

County Data Prompt More Money for Programs
When the HRQOL measures were first used in a 1992 survey in Boone County, the results helped guide services at a newly opened Family Health Center in Columbia. This clinic serves mainly low-income, uninsured, and underinsured people, and focuses on providing primary care and referrals to other health care and community services.

In 1995, the Boone County Commission asked the Missouri DHSS (then the Department of Health) to conduct a broader survey because the first one included mainly residents of the city of Columbia (where most of the county’s population lives).

The new data collected for the 1995 Boone County Health and Human Services Needs Assessment brought in more than $6 million in additional funding for county programs, according to Dr. Jackson- Thompson.

The Family Health Center used the data to win several new grants, including funding as a Federally Qualified Community Health Center from the Health Resources and Services Administration.

The data also prompted the county’s Chamber of Commerce to establish the Boone County Health Report Card, a project designed to identify and improve specific health problems. Community teams were established to address these problems, which included rising health care costs, low childhood immunization rates, and barriers to health and dental care.

Since the early 1990s, Missouri has continued to expand its use of HRQOL measures in state, regional, and local surveys. Four other counties have conducted health surveys, and in 1998, Boone County conducted a third needs assessment. The results of these surveys will help county officials plan and develop programs and services.

For example, concerns about the health and social impact of high school dropout rates in Boone County led to a major effort to hire more literacy specialists, according to Bill Elder, PhD, interim director of the Office of Social and Economic Data Analysis (OSEDA) at the University of Missouri. OSEDA works with state and local groups to collect, analyze, and translate data to help educate community leaders and citizens about public policy issues.

More recently, the HRQOL measures were included in a survey of key chronic disease indicators conducted in all 114 Missouri counties and the City of St. Louis in 2002. This study marks the first time that all four HRQOL measures have been used anywhere in the country to produce such a large amount of local data.

Public health officials will now have a sharper, more focused picture of the health of state residents, as well as baseline measures to track progress in health interventions. The data also should help educate local policy makers who sometimes dismiss state or national data as not reflecting their communities.

“Data talk in this era of accountability,” said Bert Malone, MPA, former director of the chronic disease division of the Missouri DHSS. “When you can provide sufficient numbers of county surveys, people sit up and pay attention.”

Mr. Malone, who is now the director of environmental health in the Kansas City Health Department, added that HRQOL data collected in the early 1990s helped prevent drastic cuts in the state’s arthritis program.

“We were able to use that data to sustain the program with only marginal cuts in an environment where programs were getting whacked right and left, mainly because we could adequately define the burden of disability and convince policy makers that this was a significant health condition that warranted funding,” Mr. Malone said.

 
Collaborative Relationships Offer Key Support
In addition to their own collaborations, CDC and Missouri state officials have forged strong partnerships with the state’s academic institutions, including the University of Missouri and Saint Louis University’s School of Public Health and Prevention Research Center (PRC). Each organization supports the other with funding and personnel, resulting in more research and more state and community services.

“When you can provide sufficient numbers of county surveys, people sit up and pay attention.”

Cooperative agreements, particularly with the Saint Louis University PRC, have supported studies to examine the validity and reliability of the HRQOL measures, as well as their ability to measure unmet service needs and disability rates.

“Missouri is a really good example of how the PRC works with the state health department to develop quality of life approaches,” Mr. Moriarty said. “This type of linkage would be particularly valuable for states that don’t have their own in-house capacity for analysis.”

Elena Andresen, PhD, MA, director of the PRC methods core, called the partnerships “a great model that has allowed us to do a lot of practicebased work in public health,” adding, “You can’t start these relationships easily, so if you have the foundation already, and you have funds and projects going back and forth, adding new projects becomes much easier.”

Dr. Andresen, who also is an associate professor and director of the epidemiology division at Saint Louis University’s School of Public Health, believes the HRQOL measures can serve as broad indicators of community health problems that crosscut risk factors, diseases, and health programs.

Although HRQOL data cannot help you identify a specific problem or know exactly how to change an intervention, they can be a red flag that a program is not working. If your targeted population—or a subgroup of that population—is still reporting poor quality of life or limitations in their activities, you know to dig deeper to find out why.

“HRQOL measures are not used as much as they could be,” Dr. Andresen said. “I think people often look at very specific behaviors, risks, and outcomes, and they neglect to consider general health status. I think that’s unfortunate because you can get an additional piece of information that gives you a broader picture of what interventions and programs are doing.”

Dr. Jackson-Thompson agreed. “One of the big advantages of these measures is that you don’t have to be an epidemiologist to understand them,” she said. “There’s virtually no program that wouldn’t find them useful. And they’re something the public can relate to because everybody wants good health.”

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This page last reviewed August 10, 2004

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