SAN FRANCISCO—When it comes to key public health messages about the management of arthritis, patients may not get the message, interpret messages differently than their providers do, or ignore those messages altogether.
“We need to make sure that we’re describing the programs in terms that resonate with patients, and we need to increase awareness of the programs—that they exist and how they would benefit you,” said Teresa J. Brady, PhD, senior behavioral scientist in the Arthritis Program at the Centers for Disease Control and Prevention (CDC) in Atlanta. During her presentation at the 2008 ACR/ARHP Annual Scientific Meeting, Dr. Brady outlined some of the recent initiatives undertaken by the CDC to help shape public health messages to motivate patients to actively manage their condition.
Action and Perception Gaps
“In general, most people are not doing the activities that we know can make a difference in managing their arthritis,” Dr. Brady began. For example, research has validated that people with arthritis can benefit from engaging in physical activity, watching their weight, and participating in self-management education. And yet, 67% of people with arthritis are overweight or obese, 44% are physically inactive, and only 11% have completed self-management education (SME) courses. “We haven’t really done a good job of selling tertiary prevention,” she said.
Dr. Brady synthesized results from a series of audience research projects conducted by the CDC’s Arthritis Program since 1999. To date, the CDC has conducted 81 focus groups with a total of more than 700 participants from communities across the nation. The topic-specific projects have revealed important information regarding patients’ perceptions of and motivations towards SME, physical activity, and weight control.
SME: A “Stealth” Intervention?
During initial research projects in 1999 and 2000 and a second round of focus groups conducted in 2006, CDC Arthritis Program researchers explored awareness of and receptiveness to the notion of learning techniques to manage arthritis. Round 1 projects in 1999 and 2000 recruited Caucasian and African-American males and females, ages 25–72, from a mix of income and educational levels. Round 2, conducted in 2006, included eight groups of participants in Chicago; Fresno, Calif.; and Norfolk, Va., with some limitations from their arthritis (i.e., the condition was beginning to threaten valued activities). Two major themes were revealed during the course of this work: 1) Most participants hadn’t heard of any self-help course; and 2) Patients may interpret health recommendations differently than health professionals intend.
For example, few of the focus group participants used the term manage when they described living with arthritis, said Dr. Brady. “They tolerate it, cope with it, deal with it, ignore it, or medicate it—the idea of managing their arthritis is a foreign thought.” In general, these group members reported they do not search out patient education. “Patients expect those recommendations from the healthcare system, but we’re not doing a good job of making people aware of these programs—and recommending them,” she said. When SME programs were described to participants, they indicated agreement with key program elements. In general, they preferred terms such as workshop and self-management to self-help or self-care; wanted to learn from someone who had a chronic condition; liked to hear stories about those who had benefited from the SME programs; and thought six weeks was a realistic timeframe for a class, although a two- to two-and-a-half-hour class seemed too long.
Trouble with Exercise
Perceptions about physical activity were assessed in the development of two separate communications campaigns, the first in 2000–2003 and the second in 2007–2008. Most participants were aware of the “Be physically active” public health message and reported that they were physically active. Further probing, however, revealed that by active, people actually meant that they were busy and not necessarily engaging in regular exercise programs, such as aerobic conditioning.
The word exercise conjures associations, said Dr. Brady, of young people in spandex outfits, having to sweat, and heavy exertion. These associations can be negative to some people. Other barriers to engaging in exercise included lack of time, competing priorities, fatigue, and arthritis-specific barriers, such as pain and fear of making their arthritis worse. Most were told by their doctors to exercise, but didn’t receive specifics; this was corroborated in interviews with primary care physicians. Arthritis Foundation–sponsored structured exercise programs (which teach safe techniques for exercising with arthritis) were virtually invisible to the target population.
Control Weight
The Arthritis Program tested public health messages about weight control in two broad overview research projects and a specific project in 2005 using a total of six focus groups in Anaheim, Calif.; Milwaukee; and Philadelphia. The latter included Caucasians, African Americans, and Hispanics, ages 45–70, who were overweight or obese. Participants were included if they reported knee pain and a doctor’s diagnosis of arthritis or had chronic joint symptoms. Some populations, particularly Hispanics, may not have access to care, said Dr. Brady, so it was important to include those with chronic joint symptoms who did not report a physician diagnosis.
Most participants in these focus groups had heard the message that losing weight would help their knee arthritis, and they believed that being overweight could increase susceptibility to health problems. However, the majority did not actively try to control their weight, citing a variety of reasons (e.g., unsupportive family members, difficulty changing habits, and an unwillingness to give up few remaining pleasures, such as food). In addition, African-American women believed that current weight guidelines were based on Caucasian models and were not applicable to them.
Those who tried to lose weight did it mostly for other health problems, such as diabetes, a disease “which tends to get people’s attention and makes them inclined to make dietary changes, at least temporarily,” said Dr. Brady. They did it to generically improve their overall health, not specifically for their knee pain.
Asked what would motivate them to lose 11 pounds, respondents ranked money, feeling better, looking good, and competition as their prime motivators. “Health is not a platform that we can build weight-loss strategies on,” concluded Dr. Brady. “Arthritis-specific messages are unlikely to motivate people.”
Paradoxical Beliefs and Effective Motivators
The focus groups revealed that patients’ views of their condition were often paradoxical. For instance, she said, “patients do believe arthritis is serious, but they don’t think theirs is serious.” Although pain could be a motivator to seek help or take an action, often patients reported that their arthritis (or pain caused by it) was not yet “bad enough” for them to take action. For clinicians, Dr. Brady suggested some possible strategies for communicating with their patients about self-management activities:
- Work with patients one-on-one to identify their individual motivators;
- Try approaching the concept of self-management through their other co-morbidities;
- Emphasize that engaging in exercise and learning about self-management may not only bring pain relief and allow them to move more easily, but will also help them to retain independence; and
- When recommending exercise, give specifics and urge an incremental approach, such as elevating the heart rate in 10-minute intervals.
“Arthritis doesn’t get their attention until it interferes with what they want to do,” said Dr. Brady, but, based on this focus group work, patients still value their doctors’ recommendations, and often that can persuade them to participate in SME and exercise.
The CDC’s Arthritis Program is currently working to measure the burden of arthritis, strengthen the science base, and increase the awareness of effective interventions. “We know what we want people with arthritis to do—now we need to tailor our approaches to match their perceptions to help them (and us) succeed,” concluded Dr. Brady. More information on the public health interventions to reduce the burden of arthritis is available at www.cdc.gov/arthritis/intervention.
Gretchen Henkel covered the 2008 ACR/ARHP Annual Scientific Meeting for The Rheumatologist.
