A Heart Failure Awareness Campaign that Failed the Heart - Giac Nguyen
The number one cause of death in the United States (US) each year for more than a century, with the exception of 1918, has been Cardiovascular Disease (CVD)1. CVD is an umbrella term for any abnormal condition characterized by a dysfunction of the heart and blood vessels; and includes Hypertension, Coronary Heart Disease, Stroke, and Heart Failure (HF). In 2005 alone, CVD claimed nearly 865,000 American lives1 – which is equivalent to more than 1 in 3 deaths, nearly 2,400 per day, or an average of 1 every 37 seconds. In certificates issued for these deaths, HF was listed as either a contributing or underlying cause for over 292,000 of them. Ten years earlier – in 1995, this tally was 287, 0001.
Heart Failure, a.k.a., Congested Heart Failure, is a condition in which the heart can no longer provide adequate supplies of blood to fulfill the needs of other body organs and systems. Although it can be diagnosed at any age, HF is more common in those older than 65 years of age2 and more likely in those with the following major risk factors3: Hypertension (high blood pressure), history of a Myocardial Infarction (MI, heart attack) or murmurs (abnormal heart sounds), family history of an enlarged heart, or diabetes. The most common causes4 of HF are Hypertension, Coronary Heart Disease, Valve Deformity, Cardiomyopathy (disease of the heart muscle) and/or Diabetes. In this way, HF is also the common end-stage condition for other cardiovascular and heart diseases.
It was no big surprise, hence, when data and evidence began to emerge at the turn of the millennium showing an increase in the prevalence and hospitalization rates of HF amidst the steady decline of other major heart diseases in the US over the last 3-4 decades. Due in large part to progress in pharmaceutical therapies and medical intervention approaches as well as changes in attitudes towards health, sports, exercise and nutrition in various parts of the country, more people are living longer with CVD – in general. Since HF is a common end-stage condition of CVD, this has resulted in an increasing prevalence of HF – particularly in the 65-plus population. In fact, the increase between the 70s and 90s were so striking that it was referred to as an “epidemic increase” by the American Heart Association (AHA)4. This trend has carried over into the new millennium.
Ten years ago – in 1999, Arthur Feldman, MD, PhD, then President of the Heart Failure Society of America (HFSA), quoted the US prevalence for HF at 4.6 million and the incidence at 400,000 for the year5. The latest estimate from the AHA now places the numbers at 5.7 million and 670,000, respectively4. Over the last 30 years, the HF mortality rate has more than doubled8. During this same period, hospitalizations increased from 402,000 to 1.1 million4. All this – fortunately, has not transpired unnoticed by those who have more vested interests and responsibilities in this matter.
Last year, a consortium of councils from the AHA published results of an in-depth evaluation into this alarming trend. It stated that “The increase in heart failure rates throughout the developed and developing regions of the world poses enormous challenges for caregivers, researchers, and policymakers. Therefore, prevention of this global scourge deserves high priority.”1
It went further to outline some recommendations for future focus to mitigate this problem – including one for the public health sector: “Lastly, a national awareness campaign should be created and implemented to increase public awareness of HF and the importance of its prevention. Heightened public awareness will provide a platform for advocacy to create national research programs and healthcare policies dedicated to the prevention of HF.”1
It is of interest to note how the report had started out by stating the “high priority” that the “prevention of this global scourge deserves” and then later on, after having outlined a number of recommendations it felt as “paramount to” and should be at the “core” of HF prevention – to state: “Lastly, a national awareness campaign should be created…” This – to me, is an illustration of the kind of thinking that leads to the mis-relegation of importance and misappropriation of funding that the public health sector has had to deal with, historically, in its efforts to raise awareness of, and to prevent, diseases. Especially when it comes to diseases in which the vast majority of cases are so strongly and closely linked to unhealthy diets, lifestyles and habits – e.g., fatty foods and lack of exercises in heart diseases and smoking in lung cancer.
The principal governmental agency in the US responsible for protecting the health of all Americans is the Department of Health & Human Services (DHHS). From the Office of the Secretary of the DHHS, this tremendous responsibility is delegated and distributed to 12 sub-agencies. The two most well-known are: (1) the National Institute of Health (NIH) and (2) the Centers for Disease Control and Prevention (CDC). Each has its own sub-branches to address problems related to heart diseases and – hence, HF. At the NIH, it is the National Heart Lung & Blood Institute (NHLBI). At the CDC, it is the Division for Heart Disease and Stroke Prevention (DHDSP)6.
In the private sector, various organizations exist which seek to complement or expand on the efforts of the NHLBI and the DHDSP. These include the AHA, the HFSA, and numerous heart-related professional societies and associations. Given the breadth and magnitude of the HF “epidemic” and the existence of entities such as these, various modalities of intervention/prevention have been launched in an attempt to reduce the morbidity and mortality rates of heart diseases – in general, and HF – in particular. The remaining portion of this paper is, thus, devoted to the critique of one of these national programs – the “campaign to heighten public awareness of HF,” by the HFSA.
In February of 1999, the president of the HFSA proclaimed with great resolution and fanfare the – pending but expected US-Senate resolution approval, launching of the “National Heart Failure Awareness Week” (NHFAW) campaign5. As an organization, the HFSA works to promote HF research, encourage preventative measures, and provide education and formalized training surrounding HF. For this campaign, it collaborated with a group of industry sponsors, the American College of Cardiology, and members of other closely related professional societies5.
Scheduled to unfold during February 14-21 of 2000 and strategized to capitalize on the cardio-centric thoughts and behaviors of the public around Valentine’s Day, its primary objectives were/are as follow5:
a) Enhance the public’s recognition of heart failure as a defined cardiac disease of epidemic proportions;
b) Educate the public that the diagnosis of heart failure is not a death sentence;
c) Educate the public that with early recognition, appropriate therapy, and careful emphasis on the critical aspects of diet, exercise, and medical care, patients can lead productive lives.
The NHFAW campaign uses a two-prong approach to achieve these objectives. One prong seeks to improve the diagnosing and management of HF by targeting physicians as well as other medical professionals, researchers and scientists who may have a role in curtailing the rise of HF. It does this by organizing a national convention for all these individuals to come together each February – during Valentine, to share, discuss, and exchange HF-related ideas, findings, and practices. This event is used to draw attention to the problems of HF and officially launch the NHFAW campaign each year.
The other prong encourages organization of community-based, awareness-raising events by local medical professionals to target the at-risk population and those already afflicted with HF. It also encourages that this event be scheduled during NHFAW but makes it clear that it can also take place at any other times of the year. To facilitate this endeavor, it provides a downloadable turnkey kit – complete with all the essentials, for anyone who wants to put on such an event. The kit includes items such as public service announcements for radio and printing, posters, awareness brochure, sample flyer and invitation, and PowerPoint presentation as well as a step-by-step guide in using it.
The NHFAW campaign will be in its 10th anniversary in 2010. However, given the continued growth of HF morbidity and mortality rates despite efforts to reduce them, it appears that the existence and longevity of the campaign is more a reflection of the magnitude of the problem than of the campaign’s effectiveness. Thus, in the next sections, three arguments and three corresponding proposals will be presented to illustrate the potential fallacies of – and solutions for, the NHFAW campaign.
The problems which plague the NHFAW campaign run the gamut from the obvious to the subliminal. The primary and more subliminal ones are discussed below in more details via three discrete arguments.
I. The campaign assumes that “awareness” and “fear” of disease will lead to preventative actions and lifestyle changes.
This argument is directed at the very foundation of the campaign – i.e., its objectives, as initially outlined by the President of HFSA 10 years ago. Their wordings cannot but betray them as progenies of the Health Belief Model (HBM) of behavior theory, which was first introduced in the 1950s then expanded on by Social Learning Theory in 1988.11 At its foundation, the HBM is inextricably based on how individuals “perceive” their own health situation – i.e., if they value being healthy and believe that certain actions can make them healthy, then they will engage in such behaviors to improve their health.
The NHFSW campaign was, thus, designed to (a) enhance the public’s recognition that HF is an epidemic; (b) educate the public that HF is not a death sentence; and (c) educate the public that with certain decisions and actions, they can have a productive life5. Basically, this is like saying: “Look, HF is a HUGE problem, it’s everywhere and more and more people are getting it, so you might as well accept it. But even if it that’s true and you can die from it, it doesn’t mean you have to kick it in right now or that there’s nothing you can do about it. Listen to us, we’ll show you what your options are and teach you all you need to know to deal with HF so your life won’t seem so meaningless and hopeless. Once you know the real story and what we can teach you – trust us, you are going to WANT to do this!”
As mentioned earlier, the HF awareness turnkey kit comes complete with a 23-page document that teaches how to organize an HF event3. Because HF symptoms can go unnoticed or neglected by the patient as well as confounded by physical activities and medications for other co-existing and/or pre-disposing conditions, the heart of the awareness message is geared towards getting the patient accurately diagnosed and, if necessary, started on a therapeutic regimen. The problem with these materials, however – including their PSA videos and using Linda Evans as their 2001 spokeperson, is that they are packaged with statistics and anecdotes to scare people and “cue” them into action – i.e., to get diagnosed and treated promptly and appropriately.
It is not difficult to see how the framing of these words really reflect the principles of the HBM. Taken at face values, these objectives make rationale sense. However, its fundamental logic requires that individual behaviors be – likewise, rational. As much as we like to think we are – as a free-thinking and most dominant species on the planet, evidences abound all around us proving to the contrary.
At an individual level, the evidence can be observed in a person in love, a rebelling teenager, an alcoholic, a smoker, or – in some cases, even a woman in the days before her menstruation. All can be deemed to act “irrationally.” At a group level, the examples include what we are doing to the planet, the acts and ideologies of extremist terrorists, or even crowds queuing for hours before the opening of a shopping mall on Black Friday.
In constructing its strategy on the HBM, the NHFAW campaign failed to consider the importance of powerful factors which can, and do, exert substantial influences on thinking processes, choices and behaviors at the individual level. Cultural, psychological, environmental – or any interacting combination of them, are all potentially powerful influencing factors. In the absence of this consideration, the campaign is substantially weakened.
II. The campaign’s framework marginalizes populations with lower socio-economic status (LSES).
This argument is aimed at the campaign’s framework design, which consists of two primary components: (a) the annual national HFSA convention held during NHFAW, and (b) its encouragement of local, community awareness event via the use of its turnkey kit. Both of these components can be found lacking in their objectives because of their lack of provisions for populations with the LSES population – the majority of whom are African-Americans and ethnic minorities9, 14.
Both set of activities have medical professionals at the core of its structure. Since the annual national conventions are held in a different city each year, the costs in time and expenses for most physicians in primary care – the ones at the frontline who would be most likely the first to diagnose HF in a patient, is a likely deterrent to participations. In turn, their constituents may pay the price of an untimely diagnosis or wrongly prescribed medication by a physician who may not have time to learn of the newest and latest findings.
While the national convention is predominantly clinician-oriented, the materials offered for use in local awareness events are only partially so. One of the main feature suggested and catered to by the HFSA for this event is having a medical professional to deliver the provided PowerPoint presentation on the topic. Since the turnkey kit is freely available to anyone with internet access, this implies that anyone can organize the event as long as they have a legitimate reason and an appropriate venue for doing so. The only issue may be in getting a medical professional to oversee the major “educational” aspects of the event. However, without having to even discuss issues related to the disparity in access to the internet and advance technology that the LSES population faces, still, it is not difficult to see how disadvantaged they are with this arrangement.
Assuming that such an event can be organized, accessing the event will be a major factor in attendance – as it often is for this population. If they are already afflicted but not yet diagnosed, then they are made even more vulnerable because they are more likely to want to leave the house because of their poorer health condition. Lack of finance means they will have to use public transport, which most often means buses, subways, and/or street-rails – all of which require some level of walking. This compounds the problem even more for this population because they tend to be older than 65, already having one or more the most common symptoms – e.g., shortness of breath, fluid retention in the ankles, general fatigue and/or weakness, etc., it becomes much more difficult for them to leave their home even when they do want to2.
Results from a 20-year, multi-center, prospective study of over 5115 blacks and whites of both sexes who were 18-30 years of age at baseline was published earlier this year in the New England Journal of Medicine (NEMJ)7. This was one of the first and largest study to ever look at racial differences in incident HF among young Americans. The results were surprising in that they showed black men and women in the study to have a rate of developing HF before the age of 50 that was 20 times the incidence in whites7. This holds tremendous implications for the future burden of healthcare in the US – be it diagnosis, therapy, and/or prevention.
Hence, the problems for this disadvantaged population is real and – in all likelihood, will continue to worsen before it gets better if nothing happens to change the status quo. Campaigns like the NHFAW may do more disservice to the LSES population than help it because they give the illusion that something is being done when – in fact, the opposite is more likely, and often, the case.
III. The campaign’s name risks stigmatizing the afflicted while being detrimental to its intended effort.
This argument is directed at how the campaign presents itself to the public – i.e., its name. Broken down into four components, it is no surprise that the campaign has not shown much tangible evidence, if any, of bearing fruits such as increased awareness of the risks of HF or decreasing rates of morbidity, mortality and/or hospitalization. The four components – a) national, b) heart failure, c) awareness, d) week, are discussed in more details below.
This component could end up being a trivial matter, but for the sake of completeness, it is included here. The only thing national about this campaign is that 1) its annual convention during Valentine is attended by medical professionals and people from all over the country, and 2) its “How-to-Put-on-an-HF-Awareness-Week-Event” turnkey kit is FREE for downloading by anyone in the country (or the world, for that matter). In this manner, it can be construed as misleading and – hence, creates disappointments or distrusts. Either case can then result in disinterests, non-compliance and an ineffective campaign.
b) “Heart Failure”
Naming a health awareness campaign after the underlying pathology is a suitable and logical choice. This, certainly, is how things have been traditionally done. It is direct. It goes straight to the “heart” of the problem. And it rings of familiarity – even if it has been misunderstood or is not known at all. On the other hand, as will be argued in the following paragraphs, the HFSA’s naming of its awareness campaign as the “National Heart Failure Awareness Week” (NHFAW) is detrimental to its intended efforts.
The stigmas of chronic illnesses that have most often been at the forefront of headlines and research topics in the US over the last two decades have been HIV/AIDS, mental illness, addiction and, more recently, obesity. Less common has been the stigmas of chronic illnesses such as cancer or heart disease. A study, published in the journal Psychological Report in 2002, surveyed 443 university students to evaluate attitudes towards people living with HIV/AIDS, cancer and other chronic illnesses11. The results showed that patients with heart diseases were rated significant less competent and more depressed than AIDS or cancer patients. The materials provided by HFSA for use in community “HF awareness” events totally ignored this aspect of it – focusing primarily on getting patients to get “themselves” diagnosed and treated. If patients are already debilitated by their condition and feeling depressed, the “enhancing” and “educating” that the program offers are unlikely to be appealing enough to move them to action and, thus, more likely to be ineffective from gross insufficiency.
The inadequacies of the HBM presented in the previous sections, again, rear its head in the form of the campaign’s inclusion of the word “awareness” in its name. Given how the HBM is so dependent on the “if people knew... then they would do it” notion and how inadequate the HBM has been found to be in public health intervention campaigns, promoting awareness alone is no longer sufficient if the desired outcome involves any change in behaviors or mindset. The testimony for this are the millions of lives and billions of dollars lost to tobacco use over the last four decades – during which myriad attempts were made to raise the public’s “awareness” of the many harmful, and potentially fatal, effects awaiting down the road for its users.
Another issue with the campaign’s name is that it is announced as an awareness “Week.” However, in espousing only “a week” of awareness for an issue that is claimed to have such profound effects on the health of the population, the campaign is denigrating the importance and magnitude of HF in the minds of the public. In practically all cases, HF takes years and decades to develop. In devoting a “week” to try and affect people’s behaviors and perception of it through such a program is likely to bring very minimal results, if anything.
It may seem, after reading the arguments above, that there is nothing good about this campaign – there is. The annual national convention, the quality of the turnkey kit items, and the HFSA website serving as a conduit for accessing additional information are all good features of the campaign. However, there is much that could still be improved on. With respect to the three arguments presented in the previous section, corresponding proposals of alternatives now follows.
I. Appeal to the desire to “control” via improved quality of life as the impetus behind the desire to modify behaviors.
This proposal recommends that the objectives of the campaign be redefined and rewritten with a branding theory in mind such that the campaign becomes a marketable product. Patients are to be viewed as valuable customers to whom this product with be pitched and with whom a long-term relationship is desired and to be established. In brief, the objectives should mirror the following:
a) Increase patient understanding in the importance, and guide them in the obtainment, of prompt, accurate diagnosis and therapy; and
b) Advise patients on how to gain back control of their lives through proper regimens of exercise, diets, medical therapy and regular check-ups;
c) Act as a common source of information for both patients and care providers such that both can obtain the same piece of information;
For additional details on what is involved in developing this campaign into a “product,” please refer to proposal III, below.
II. Restructure the framework of the campaign to include components that can better address the needs of LSES populations and communities.
This proposal calls for a restructuring of the current framework so that it can better include the LSES populations. Given the current infrastructure of US communities and health systems, the more cost-effective approach may be to start off with new TV and/or radio advertisements – or PSAs. The one current available on the website dates back to 2001 and features Linda Evans, a television and movie actress. However, it is apparent the Ad was derived from the HBM in that she talked of what moved her to action –i.e., her mother’s death, while her message worked off of guilt and fear3. As discussed earlier, this approach has been shown to be grossly deficient when applied to reality.
In creating an advert that follows the objectives, principles and concepts discussed in Proposal-I, above, and outlined in Proposal-III, below, the primary objective should be to get the patient to “want” to seek out diagnosis and or therapy, regardless of their SES. Towards this end and to be sensitive to the broad spectrum of viewers who will see the Ad, the “product” being pitched should be aimed at one, or more, of the core values such as “control,” “freedom,” “mobility,” “independence,” “happiness,” “love,” “friendship,” and/or “improved quality of life,” etc .
Done properly, the Ad ought to be able to move people into action, which is to either go see a doctor and/or to attend a local HFSA awareness event. Per the recommendations detailed below in Proposal-III, HFSA awareness events would be more easily accessible if they took place locally and arranged by a system of community coalition networks. Such a system could be established based on volunteerism.
For additional details on what is involved in developing this campaign into a “product” and establishing a system of community coalition networks to support it, please refer to proposal III, below.
III. Use a new campaign name, logo and/or identity (brand) that is more appealing – i.e., more positive, inspiring and empowering.
This proposal suggests that a branding theory be utilized to redefine the campaign and establish a stronger image and presence. With regards to the three issues discussed in the previous section, the new campaign name should avoid – at first impression, any:
a) Indication of locality – e.g., national, community, etc.;
b) Mentioning of a pathological condition;
c) Reference to terms such as “awareness,” “education,” or “prevention”, etc.;
d) Indication of a time-period – e.g., a day, week, or month, etc.
One example of a similar campaign that has applied this similar approach with relative success is the “Heart Truth – Red Dress” campaign by the NHLBI14 and its partner organizations. Much like the current NHFAW campaign, it was launched in 2002 to raise awareness amongst women to the dangers of heart diseases.
This proposal recommends the use of a branding theory to create a new campaign brand and image as follow – as suggested by Siegel12:
a) Define it as a “product” – make it a marketable entity. For this, it is suggested that the campaign be called “The Heartfelt! Campaign.” This suggestion works because it is very easy to see how – whether it is the patient on the receiving side, the care-provider giving the therapy, or the family members watching on the side-line, all will be see it as something positive, something they would “want” to be a part of;
b) Determine what the benefits will be for the recipient/patient. For this, it is suggested that the campaign packages not just “knowledge” about HF, its symptoms, dangers and treatments, etc., but also a more direct and active plan of activities to help patients acquire or improve their Quality of Life and, thereby, attain some level of control over their condition(s). This – is the promise;
c) Develop an image that is consistent and reflective of the product & promise. For this, it is suggested that a logo design which is simple yet unique and does not marginalizes anyone on basis of socioeconomic, gender, sexual, age, race and/or cultural status be designed with which the campaign can be identified with and related to. The colors used should also be given careful attention to stay consistent with the image desired. The current logo with the individual figure in white against a half-hearted, black background is not a very good design due to the dark and foreboding sense it conveys. At the very least, the image should exude LIFE, HOPE and/or ACTION.
The “Red Dress” campaign mentioned earlier – as nice and clever as it is, has been found to be inadequate in reaching the LSES population with its message. This is understandable given how its image is so often presented in affiliation with the beautiful (models), rich (diamonds and jewels), and famous (Barbara Bush).12 Hence, examples such as this one needs to be kept in mind in the designing of the “image.”
d) Provide support to ascertain or guarantee the promise. This proposal suggests the establishment of a system of community coalition network whereby patients can more conveniently and readily obtain and/or given support. This can be structured as a system of volunteers by patients and their families. Given how recent studies have indicated an eminent rise in prevalence of younger people developing HF earlier, it is essential that a preventative system and approach are implemented as early as possible. A volunteer support system such as this could be invaluable to the community not just for HF but also for the many other chronic illnesses.
A campaign like the NHFAW is a much needed endeavor, this is clear. Given mounting evidence reported in various journals regarding the continued rise in rates of morbidity and mortality not just in the US but around the world, the success of such campaigns are even more essential and needed than ever. Careful attention, hence, must be given in the assessment of programs already in place to determine whether they are as useful and efficacious as they claim, can be or should be. The issue is even more important when one considers how many ineffective public health campaigns are – for whatever reasons, kept in place year after year by the some of the primary health institutions and agencies in the US.
The HFSA, like many private organizations, has its own source of private funders and list of supporters. It is, thus, able to address issues that are not adequately covered by public institutions responsible for protecting the health of Americans – e.g., the NIH and the CDC. In this regard, it offers a valuable service to the general public. However, its endeavors are no less prone to fallacies than any other institution or organizations. Examples of such fallacies are detailed already in the previous sections.
It needs to be pointed out – however, that some of HFSA’s primary supporters are “giant” private entities from the medical and pharmaceutical industries – e.g., Abbott Laboratories, GlaxoSmithKline, Guidant Foundation, Medtronic, Inc., and St. Jude Medical. Given how much this campaign is focused on getting HF patients diagnosed and started on some medical regimen via increased “awareness” rather than on preventing the disease from starting, it begs the question of whether there is a conflict of interests here. In light of the fallacies pointed out in the NHFAW campaign, there is cause for concern that this campaign is not doing all that it could – be it due to having based its campaign on outdated health behavior models or otherwise.
Evidence has shown us how ineffective past public health models have been, and that raising awareness alone is no longer adequate to curb the incidence of diseases that stem from unhealthy behaviors. Hence, in addition to being coupled with action plans, health awareness campaigns must be derived from theories and models that more correctly mirror our daily realities and the way we really behave. It is hoped that the “heartfelt” recommendations made here for the NHFAW campaign will lead to its implementation and/or some measurable beneficial health effects for the afflicted, as well as the at-risk and the LSES populations, amongst us.
1. Schocken, DD et al. “Prevention of Heart Failure.” AHA Scientific Statement. Circulation. 2008;117:000-000, p1-22.
2. Heart Failure Society of America. URL: http://www.hfsa.org
3. About Heart Failure. URL: http://www.abouthf.org
4. American Heart Association. URL: http://americanheart.org
5. Feldman AM. “Heart Failure Awareness Initiative Launches Public Education Campaign.” Heart Failure Society News. September 1999, p1-2.
6. US Department of Health & Human Services. URL: http://www.dhhs.gov
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8. “Abstract 3103: A New Epidemic of Heart Failure in the United States: Findings from the National Hospital Discharge Surveys, 1980-2006,” October 28, 2008.
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11. Edberg M. “Essentials of Health Behavior: Social & Behavioral Theory in Public Health.” Jones & Bartlett. 2007, p36-38.
12. Siegel M, Lotenberg LD. “Marketing Public Health – Strategies to Promote Social Change.” 2nd Ed. Jones & Bartlett. 2007 (62-63).
13. National Heart Lung & Blood Institute. URL: http://www.nhlbi.nih.gov
14. Christian AH, Rosamond W, Anthony R, White LM. “Nine-Year Trends And Racial And Ethnic Disparities in Women's Awareness of Heart Disease And Stroke: An American Heart Association National Study.” Journal of Women's Health. January/February 2007, 16(1): 68-81. doi:10.1089/jwh.2006.M072.