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Office of the Surgeon General (US). Report of the Surgeon General's Workshop on Osteoporosis and Bone Health: December 12 – 13, 2002, Washington, DC. Rockville (MD): Office of the Surgeon General (US); 2003.

Cover of Report of the Surgeon General's Workshop on Osteoporosis and Bone Health

Report of the Surgeon General's Workshop on Osteoporosis and Bone Health: December 12 – 13, 2002, Washington, DC.

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Promoting Awareness and Action

The third panel and the luncheon presentation and discussion focused on ways to promote awareness and action among the public and health care professionals. The panel was chaired by Lynne Wilcox, M.D., M.P.H., of the Centers for Disease Control and Prevention (CDC).

Promoting Public Awareness through Social Marketing

Edward Maibach, Ph.D., M.P.H.

Porter Novelli

Dr. Maibach summarized three decades of experience on education programs and behavior change with five key observations:

First, public education works, as suggested by massive secular trends in smoking rates, use of seat belts and child safety seats, cancer screening rates (e.g., mammography), and incidence of sudden infant death syndrome or SIDS. But he cautioned that public education tends to work slowly (over a period of 5 to 10 years) and that some health behaviors are more easily influenced than others through public education. For example, the SIDS campaign was effective because it targeted a highly motivated audience (parents concerned about the safety of their infant children) and because the requested behavior change was easy (putting the child to sleep on his or her back). Changing physical activity levels is a much more complex and challenging task that may take decades to achieve.

Second, the “general public” is not a valid definition of the target audience. Different people have different educational needs, and those embarking on a public education campaign must segment the audience into homogenous subsets of people, tailoring educational efforts to the extent possible to each group’s unique needs.

Third, education is not equivalent to motivation or behavior change. Knowledge gained through education does not automatically result in a change in attitude or behavior. Education requires the development and delivery of simple, clear messages that are frequently repeated. Motivation requires finding the “difference that makes a difference.” Behavior change is more likely to occur with education, motivation, and the ability to make change.

Fourth, the process works best when three critical assets are used: campaigns that are based on evidence of proven effective interventions, behaviors, or procedures; behavioral science that helps understand why people do what they do and what can be done to help them change; and consumer research that ensures that programs are relevant, credible, and motivating. Dr. Maibach warned against getting ahead of the evidence base, and cautioned that failure to conduct consumer research may cause a campaign to fail.

Fifth, the most effective campaigns are “big, messy” programs that include contributions from all sectors of society (e.g., government, nonprofit, and for-profit organizations) and a multitude of communication vehicles and program elements. That said, leadership often comes from one or a few organizations, as evidenced by the successful educational campaign on blood pressure spearheaded by the National Heart, Lung, and Blood Institute (NHLBI).

Disseminating New Information

David Chambers, Ph.D., M.Sc.

National Institute of Mental Health

Dr. Chambers reviewed key issues in disseminating new information to the public. First and foremost, he reiterated the point made by other speakers–that information presented to an audience will not necessarily lead to behavior change. Everyone does not interpret information in the same way, and the importance of information will be related to the context in which it is disseminated. Information may evolve over time, and many individuals might choose to challenge the information being presented. Developers of education campaigns should keep tabs on changes in the field and be prepared to respond to any challenges to data or other information that is included in an awareness campaign.

Questions to be considered when developing a campaign to disseminate new information include the following:

  • ▪ How was the information created? Answering this question effectively can help in responding to any challenges.
  • ▪ Who is presenting the information, and how is it being presented?
  • ▪ Is the information being retained by the audience and is it leading to behavior change? These may be the most critical questions.

Dr. Chambers recommended that those planning an information dissemination campaign use active and interactive methods rather than passive ones (e.g., handing out paper); involve target audiences in planning the dissemination campaign; use multiple disciplines in designing the dissemination plan; and track the outcomes of the dissemination campaign (including who received the information and whether knowledge has been gained).

Dr. Chambers also urged campaign developers to take advantage of important contributions from other fields, including social marketing (e.g., for “packaging” of messages), behavioral change (for “using” the information), organizational culture, anthropology (to help determine how different communities will react), organizational change, and finance/economics (to craft economic arguments for behavior change).

Direct-to-Consumer Advertising

Richard Kravitz, M.D., M.S.P.H.

University of California, Davis

Dr. Kravitz believes that the private sector’s financial resources and ability to reach a huge market can be brought to bear on the public health issue of bone health. Spending on direct-to-consumer (DTC) advertising reached roughly $7.5 billion in 2000, and is expected to continue growing rapidly. DTC apparently works–drugs with the largest DTC budgets enjoy the highest sales increases, while several studies show that DTC ads are read and acted upon. For example, a random digit dial survey in Sacramento found that 56% of respondents had read an entire DTC ad. More than a third (35%) asked their physicians for more information on the drug, while 19% asked for a prescription. A binational clinic survey suggests that patients who request a prescription have an 8.7 times higher chance of getting one, even though physicians are much more ambivalent about the need for the drugs their patients request (versus those they prescribe without patient input).

Dr. Kravitz sees potential harms and benefits in DTC advertising. On the positive side, DTC advertising encourages patients to seek care when needed and allows for more informed decision making, more active involvement in care planning, and a greater understanding among patients of their conditions. At the same time, however, DTC advertising may encourage the “over-medicalization” of certain conditions and lead to too-low thresholds for when a condition requires treatment. Most important, perhaps, physicians who are inundated with questions from patients may find themselves with inadequate time to address other, more pressing clinical needs among patients.

But both the critics and the proponents of DTC advertising agree that the benefits will outweigh the risks for conditions which are under-diagnosed and under-treated, and when the net benefits of treatment are evident even among less severely affected individuals. Osteoporosis is clearly under-diagnosed and is under-treated among certain populations, including men. But the absolute benefits of treatment are clearly dependent upon the baseline risk, with high-risk individuals benefiting much more from treatment than those at lower risk. As a result, the educational value of DTC advertising can be enhanced by targeting those groups with the highest absolute risk of osteoporosis, such as elderly women and those with a previous fracture. The educational value can also be enhanced by describing benefits and risks in understandable, quantitative terms (many DTC ads do not do this at present), and by portraying drugs as playing an important role in an overall package of care for osteoporosis, a package that may also include calcium, vitamin D, exercise, and hip protectors.

Stage-Matched Interventions for Behavior Change

Sara S. Johnson, Ph.D.

Dr. Johnson presented a transtheoretical (TTM) model for behavior change that emphasizes the importance of matching interventions to an individual’s readiness for change. There are five stages of change in this model–pre-contemplation, contemplation, preparation, action, and maintenance. In other words, behavior change is a process. While an education campaign can initiate this process, it cannot sustain it. Stage-matched interventions and campaigns are needed for all levels, including those directed at individuals, providers, and communities.

Dr. Johnson shared the results of a study that applied the TTM to osteoporosis prevention and management. This survey found that 25% to 57% of individuals were in the pre-action stage with respect to key behaviors related to osteoporosis and bone health. Among these individuals, 34% to 57% were in the pre-contemplation stage. The implications from this study are clear–while a large proportion of the population may be at risk of osteoporosis and bone disease, many of these individuals are not currently contemplating behavior changes that could reduce this risk.

Changing behavior to reduce the risk of osteoporosis and bone disease is a multivariate problem requiring multivariate solutions. The process can be accelerated by matching interventions to the target audience’s readiness for change. Scientifically valid assessments can be created to measure stage, thus allowing interventions to be targeted appropriately. As a result, tailored messages can be delivered to diverse populations. But the challenge is to go beyond education to develop population-based programs for each of the behavior changes that are important to improving bone health.

Educating Health Care Professionals

Deborah Gold, Ph.D.

Duke University Medical Center

As increased life expectancy puts more people at risk for osteoporosis, the need for early, accurate diagnosis becomes more critical. While osteoporosis can be reliably diagnosed, treated, and prevented, it often goes unnoticed in patients, leading to severe physical, social, functional, and psychological consequences, including increased mortality and morbidity. Thus, improving the diagnosis and treatment of osteoporosis is a major challenge and priority for health care professionals.

Unfortunately, physicians and other professionals receive relatively little training about osteoporosis and bone health. At the undergraduate level, pre-clinical training may cover osteoporosis during study of the pathophysiology of the endocrine and/or musculoskeletal system. Osteoporosis may also be touched upon in a case presentation or standardized patient interview, and may be included in certain rotations. But overall, health professions students spend less than an hour studying osteoporosis during their undergraduate days.

The situation is little better during residencies and fellowships. Residents and fellows in most specialty areas rarely see a patient with osteoporosis. Primary care residents have little opportunity to treat osteoporosis and fractures (especially spine fractures), since most spine compression fractures are treated on an outpatient basis outside of academic teaching centers, and hip fractures are treated by orthopedic surgeons. Even residents and fellows in endocrinology and rheumatology have little exposure to the disease.

Once a physician finishes his or her formal education, continuing professional education on osteoporosis is available from a variety of sources in a variety of formats, including through provider web sites that link to the sponsors of such programs (e.g., the National Osteoporosis Foundation). Many courses are funded by unrestricted grants from corporate sponsors. While some health professionals are uncomfortable with such funding, Dr. Gold believes that these programs are generally of high quality.

Looking ahead, Dr. Gold cautioned against relying on information alone. While many health professionals have inadequate knowledge about osteoporosis and how to identify and treat it, an additional problem is the failure to apply what knowledge they do have in patient care settings. Thus, both information and application need to be stressed in all training of health professionals.

Learning from Other Campaigns

Edward Roccella, Ph.D., M.P.H.

National High Blood Pressure Education Campaign

Dr. Roccella shared insights from the National Heart, Lung and Blood Institute’s (NHLBI) highly successful education campaign on high blood pressure that may be applied to any similar type of campaign on osteoporosis. The NHLBI campaign has been instrumental in dramatically increasing knowledge about blood pressure, which has led to a tripling in blood pressure control rates since the campaign began. Lessons of relevance to bone health include the following:

  • ▪ Develop a focused program with reasonable, achievable objectives. Campaigns that try to do everything end up accomplishing nothing.
  • ▪ Develop partnerships with other organizations that may have unique ideas and/or access to the target audience. Noting that a “rising tide lifts all ships,” Dr. Roccella urged the formation of broad coalitions.
  • ▪ Constantly monitor and evaluate the campaign, and make mid-course corrections as needed. Program objectives may need to shift over time.
  • ▪ Knowledge alone is not enough. Rather the focus should be on application and action. In other words, as other speakers also suggested, mass media campaigns and continuing medical education alone will not spur behavior change.
  • ▪ Campaigns must focus on the many “late adopters” to behavior change. Dr. Rocella urged the formation of partnerships with other organizations that may have unique access to those at greatest risk for bone disease. The same type of approach worked in developing a campaign to reduce salt use; organizers partnered with the food processing industry, which produces products that account for 80% of salt intake.

Personal Perspectives

The panel included two presentations from individuals whose illnesses illustrate the real need for greater awareness about bone disease among the public and the medical profession.

Judge Jewel Lewis

In the late 1970s, Judge Lewis was diagnosed with Paget’s Disease, a disease that affects bones by causing calcium loss in the spine (the calcium is redeposited elsewhere in the body, often the skull). At the time of her diagnosis, Judge Lewis was 5'8" tall. She was informed by doctors that there was no treatment for the disease, and that her fate was to become “a little old lady with bowed legs.” Today she is 84 years old and a foot shorter, but has not yet developed bowed legs. She has suffered a series of spine fractures, however. After finding that none of the treatments she tried as an NIH research subject worked, her primary treatment today is exercise, calcium, and vitamin D.

Paget’s Disease has had a profound impact on Judge Lewis’ life. Because she traveled for her job as a Federal administrative judge, she was forced during her time as part of the NIH research trial to carry around a refrigerated bag with her medications. Having access to this bag at all times was critical to complying with NIH’s rigid medication schedule. She is presently being treated for angina and hearing loss, both of which are a result of Paget’s Disease. Looking ahead, she urged the development of education campaigns for both the general public and the medical community on this terrible disease. She also called for frequent testing and early treatment for those with the disease.

Thomas G. Carskadon

A psychology professor and an advocate for research and screening for osteoporosis, Dr. Carskadon served as the “token male” on the panel. His story is a classic example of the failure of the medical profession to appreciate the potential for severe osteoporosis in men. When he first sprained his ankle many years ago, the doctor told him he may have a “little osteoporosis” and that he should take calcium so that the bone can “grow back.” It was not until years later, however, that he finally received a bone scan that showed he had severe osteoporosis. At this time, he continues to take bisphosphonates, which have helped him regain a bit of bone density. His BMD is presently stable, albeit at a very low level. Osteoporosis has had a profound effect on his life. He is constantly afraid of falling, and as a result seriously curtails his activities (e.g., he gave up running).

“Where in the heck were the doctors? I had a slew of warning signs but no one picked it up.” – Thomas G. Carskadon

Dr. Carskadon made an impassioned plea to get the word about osteoporosis in men out to the public and to the caregivers on the front lines of medicine, and for the development of formal guidelines for screening and treatment of the disease in men. Noting that it costs only $150 for a test that can very accurately diagnose osteoporosis, he also called for revisions to existing guidelines to make bone density tests more widely available. The failure to spend $150 today to diagnose the disease in its early stages will inevitably lead to higher costs later in life when fractures occur. As he noted, “you can pay now or pay me later.”

The Role of the News Media in Educating the Public on Osteoporosis

Susan Dentzer

The NewsHour with Jim Lehrer

During lunch, Ms. Dentzer expanded on the issue of education and awareness by discussing the role of the news media in telling the “hard truth” about osteoporosis. Ms. Dentzer was introduced by Stephen Katz, M.D., Ph.D., Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, who noted that Dr. Elias Zerhouni, director of the National Institutes of Health, often urges his team of institute directors to “communicate, communicate, communicate!”

Ms. Dentzer believes that osteoporosis should be a major story in the media. With 10 million Americans having the disease, another 34 million at risk of developing it, and 1.5 million fractures occurring each year because of it (at a cost of $15 billion a year), the media should be jumping on this story. If that is not enough to get the media interested, the growing costs of osteoporosis–projected to reach $50 billion by 2040–and its association with other common conditions such as depression, lack of mobility, social isolation, and disability, should be.

Yet neither the medical community nor the media appear to be paying attention to the disease. Many doctors do not believe that osteoporosis is as big a threat to health as other diseases, such as cardiac disease, cancer, or diabetes. Many physicians, unaware of the death and disability caused by osteoporosis, view the condition as a normal part of aging. Perhaps because of this indifference among the medical community, mainstream media is also not paying much attention to osteoporosis. A review of recent literature suggests a paucity of comprehensive media coverage compared to other major diseases such as heart disease and diabetes. Ms. Dentzer’s own unscientific review of the literature found only 20 stories of a comprehensive nature since January 2001. Much more common are situations where osteoporosis receives a brief mention in a story about general women’s health issues. A good example of this approach can be seen in the recent coverage of the end of the combination hormone replacement therapy trial in the Women’s Health Initiative or WHI.

The big problem with coverage of osteoporosis is that journalists have not yet been able to “put a face” to the disease. The most popular health stories are based on anecdotes about individual patients. But even though osteoporosis affects millions–including well-known individuals like Ronald Reagan and Julia Child–there have not been any “celebrity” spokespersons for the disease, perhaps because of social stigma or the disease’s association with aging. In fact, in an era of “disease by celebrity,” there has been just one public face so far–Lauren Hutton in Wyeth’s commercials for HRT. But even in this instance, osteopenia and osteoporosis are not mentioned by name in the ads.

Ms. Dentzer also noted that it takes systematic coverage over a long period of time to get a story out to the public in a way that they truly understand. For example, a new Partnership for Prevention poll found that 69% of the 1,003 women surveyed (all between the ages of 55 and 70) had heard of or read about the WHI HRT study. Nearly six in 10 (58%) said they were concerned about the risks of HRT. But nearly one-third of the women thought that HRT helped prevent some of the diseases associated with aging, such as heart disease, stroke, and breast cancer. (The study found that HRT actually increased the chances of getting these diseases.)

To get stories on osteoporosis out to the public, Ms. Dentzer believes that the news media needs to give osteoporosis and osteopenia a face (including a male face). The media needs to profile people with the disease, explaining what has happened to them with respect to lifestyle, disability, and poverty. The media should also graphically discuss what happens during and after a hip fracture or other bone fracture, and should publicize the large costs of these avoidable conditions. But the media must also acknowledge the limits of current knowledge about screening, prevention, and treatment. The public often becomes disenchanted when new findings contradict old ones. Thus it is critical to be honest about the fact that much is not yet known with respect to preventing and treating bone disease, and that new knowledge will be forthcoming in the years ahead.

With those limits acknowledged, the key challenge is to put forth what is believed to be known about prevention, and to clarify that taking calcium alone is likely not sufficient to solve the problem. These messages should include an emphasis on the role of exercise (especially the weight-bearing variety) in prevention, and should also stress the critical role of exercise with respect to a wide variety of health issues. Ms. Dentzer urged the bone health community to work with advocates for other diseases in developing messages on those behaviors–including diet and exercise–that have an impact that cuts across multiple diseases. Too many disease-specific messages can confuse the public. That said, the media also needs to convey specific information about the pros and cons of screening, including those situations where routine screening is recommended (e.g., for women over the age of 65). The media also needs to communicate the benefits and risks of various treatment options, including drug regimens. Finally, the media needs to get information out to physicians. Ms. Dentzer shared the results of a recent study of 114 women whose BMD tests showed osteoporosis or low bone mass. Even though these results were shared with the women’s physicians, fewer than one in 10 (9.7%) patients received recommendations from their physicians that were consistent with those of NIH and NOF.

In closing, Ms. Dentzer asked health care professionals to help the media in doing a better job. To that end, she called for the Surgeon General’s Report to be written in the clearest language possible. She also suggested that a conference or in-depth briefing be held for journalists in advance of the report’s release. Finally, she asked that knowledgeable professionals make themselves available to the media, and that they share stories on the human suffering caused by osteoporosis as well as the research findings documenting the tremendous costs borne by society and the tremendous opportunities to reduce these costs through better prevention, screening, and treatment. But she cautioned that commercial television will always be most interested in brief “sound bites,” and urged health professionals to think about these sound bites when addressing the media. She also reiterated the importance of putting a face to the disease, as the public will tend to remember personal stories, not data.

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