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INTRODUCTION |
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In the past two decades there have been significant gains in our understanding of prevention and education related to lung disease, much of it enabled by research sponsored by the Division of Lung Diseases (DLD) of the National Heart, Lung, and Blood Institute (NHLBI). This paper will discuss the evolution of the prevention and education knowledge base through focus on three dimensions of research. First, it will use chronic obstructive pulmonary disease (COPD) as a case for examining advances in our ability to screen and identify patients at risk for developing disease. It will illustrate that COPD research has moved us closer to being able to identify populations that should benefit from early and targeted interventions. Second, it will examine the literature on smoking, perhaps the most damaging of all health-related behaviors because of its strong association with a range of respiratory conditions. The aim will be to assess recent contributions to intervention research on efforts to prevent or reduce smoking as a risk factor in lung disease. Third, it will explore the extant research related to asthma education and describe the development of the National Asthma Education and Prevention Program (NAEPP). It will discuss how research and educational initiatives in asthma have contributed to advances in disease management by patients, including changes in self-management behavior, health status, health care use, and the quality of life.
The concluding section of the paper will consider future research directions. Given how far prevention and education research have taken us, where are the gaps in our knowledge and what are the priority areas for further investigation?
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SCREENING AND PREVENTION IN COPD |
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Chronic obstructive pulmonary disease is now the fourth common cause of death in the United States (1), and it is expected that 110,000 or more deaths from COPD will occur during 1997 alone. Chronic obstructive pulmonary disease is an extremely common disease, but because it is relatively asymptomatic early in its course, most would agree that the currently estimated prevalence of 16 million cases, based on physician diagnosis, probably represents less than half the cases that would be identified if screening spirometry were to be performed. The greatest cause of COPD is smoking, but many smokers do not develop COPD. If screening spirometry was performed on all smokers, those most likely to develop COPD could be identified early, and efforts to prevent and treat this disabling and lethal disease could then be focused on those individuals at greatest risk.
Research over the past 30 years has increased our understanding of the basic mechanisms of COPD (see review by Anthonisen and Senior, this issue, p. S139), its pathogenesis, the varying pathologic entities encompassing this disorder, including chronic obstructive bronchitis, emphysema, and asthmatic bronchitis, and much about the epidemiology of this disease. The natural history of COPD is characterized by a slow, progressive limitation of maximal expiratory airflow. This can be well assessed by simple spirometry, and only two parameters, the FEV1 and FVC, need to be measured to obtain the most useful information (2). Variations in natural history are probably related to differences in the dose and influence of various risk factors. By far, the important risk factor is a behavioral one: cigarette smoking. It is also the risk factor that has been most completely studied (3). We know that only a certain percentage of cigarette smokers develop COPD or, stated another way, have progressive decline of airflow. This percentage is estimated to be somewhere between 10% and 30% (4).
The progressive worsening in airflow obstruction characteristic of COPD has historically been thought of as affecting
susceptible individuals, as if the smoking population could be
clearly separated into susceptible smokers and all other smokers. An apparent dichotomy can be created by comparing the
mean decline in pulmonary function of those who have the
most severe disease with the mean decline of all other smokers. When one does this, it appears that those at risk of COPD
have a decline in their FEV1 at the rate of about 60 to 70 ml
per year, and the others decline at about the rate of 20 to 30 ml per year (4). Although there are many individuals who decline at intermediate rates and even, of course, outside the two
means, nevertheless, there are clearly two extremes
cigarette smokers who decline slowly, and those who decline much
more rapidly. Since the variations in decline probably relate to
variations in susceptibility to risk factors other than smoking,
this will be a fruitful area of further investigation. Of course,
those smokers without excessive decline in pulmonary function are still at great risk of developing other smoking-related
diseases, and they should not be reassured of the safety of continuing to smoke.
There are a number of hypotheses as to why only certain smokers are susceptible to COPD, but currently there is no uniform consensus. The Dutch hypothesis is perhaps the most longstanding, and it states that the smokers who are at risk are either atopic or have clinical or subclinical asthma that is exacerbated by exposure to cigarette smoke (5). While this is an intriguing possibility, it is by no means completely accepted. There is agreement by most that bronchial hyperreactivity is a risk for COPD (6), but it is not known whether this occurs because cigarette smoking causes bronchial hyperreactivity or whether the bronchial hyperreactivity preexists cigarette smoking.
It is quite clear that premature airflow decline is an excellent predictor of continued airflow decline. In fact, Fletcher in his now famous Horse Race Hypothesis pointed out that one could predict with remarkable accuracy those who would develop severe COPD by identifying younger smokers who are beginning to have early airflow obstruction (4). Fletcher uses the analogy of the horse with a lead in the beginning of the race having a greater likelihood of winning; this, he says, is comparable to early airflow obstruction indicating a greater likelihood of more severe airflow obstruction in the long run.
Because there is such a large reserve of pulmonary function, this deterioration in airflow obstruction can proceed undetected for years if pulmonary function tests are not done. In fact, except in those individuals engaging in vigorous exercise, quite severe airflow obstruction is often present before any symptoms of COPD develop. In fact, those 10% to 30% of cigarette smokers who are declining the most rapidly can be identified with simple spirometry, long before symptoms develop (7). These people already have mild airflow obstruction, and those who continue to smoke will most likely progress to develop severe COPD. With the publication of the results of the Lung Health Study, a new scientific basis for early identification and intervention in COPD has now been established (7). Several key points should be specified. Identification of mild but clinically significant airflow abnormalities in a young to middle-aged population is possible with spirometry. The excessive rate of decline in FEV1 over 5 yr can be virtually stopped by smoking cessation, compared with ongoing losses in FEV1 in continuing smokers. The Lung Health Study has now documented beyond any doubt not only that early airflow obstruction can be detected by simple spirometry in a large number of asymptomatic smokers, but also that smoking cessation in this population can be remarkably effective in modifying the otherwise certain deterioration in pulmonary function (7). It has been known for some time that the natural history of COPD is that of progressive airflow deterioration, but the Lung Health Study is the first prospective demonstration of an actual intervention in a large population group at risk of developing COPD where the natural history of the development of that disease was, in fact, significantly modified.
Cigarette smoking is extremely important in the development of many other diseases. Of paramount importance is the fact that even mild airflow abnormalities signal a high risk of death from lung cancer, heart attack, and stroke. Previously, it was generally agreed that smokers who develop severe airflow obstruction (when compared with other smokers) are at much greater risk of developing other major diseases, including the other three leading causes of death in the United States: coronary artery disease (8), lung cancer (9), and stroke (10). The wide-ranging estimates of from 10% to 30% of smokers likely to develop COPD may be accounted for by having a population likely to die from heart disease, lung cancer, and stroke before they get to the stage of symptomatic COPD. In other words, competing causes of mortality prevents the development of symptomatic COPD. However, smoking cessation in individual patients has been documented to have positive health affects in almost all of these diseases (11). Whereas smoking cessation is important for all smokers, smokers with airflow obstruction are an easily identifiable group of patients for whom significant expenditures on early and very aggressive smoking cessation efforts can easily be justified. From the standpoint of cost efficacy, it would seem to make sense to focus intense efforts on those at greatest risk rather than merely using a shotgun approach on wider populations.
Prevention and management of COPD, however, goes beyond smoking cessation. Today a large armamentarium of therapeutic agents is available to deal with both asymptomatic and symptomatic patients with COPD. These therapies, along with smoking cessation as the most important intervention, must be offered and supervised by primary care physicians and other "front-line" health care providers working in partnership with the educated patient. Early identification and intervention among smokers at greatest risk could become the cornerstone of a very important new public health initiative.
To that end, it is worth reviewing the role of public and physician education in successfully reducing cardiovascular disease. The dramatic nature and frequency of heart attacks and strokes in the lives of Americans in the past few decades probably has contributed to a "call to action," and, when combined with the efforts of physicians, scientists, and public health officials, has resulted in effective strategies for the prevention and early treatment of cardiovascular disease. This same mobilization for early and aggressive preventive management for COPD has not happened, perhaps due in part to the lack of symptoms in early stages and the slow progression of disease and disability over many years. However, many diseases are symptomless early. Certainly, heart attacks occur without any symptoms of high blood cholesterol, and hypertension is known as the "silent killer." Successful prevention depends upon both patient education and medical intervention.
The Surgeon General's Reports on the health hazards of smoking have played an important role in educating the public, reducing the prevalence of smoking, and thus reducing the morbidity and mortality of heart attack and stroke. The control of major cardiovascular risk factors today forms the basis of early identification of life-threatening abnormalities at a time when preventive measures can be instituted. Improvements in the management of symptomatic ischemic and thrombotic cardiovascular disease have also contributed to a reduction in heart attack and stroke. These advances can be attributed in large part to advances in understanding the causes, pathogenesis, diagnosis, and treatment of cardiovascular disease and to national health care education programs sponsored by the NHLBI.
An important part in making the risk factors of hypertension and high blood cholesterol real for patients has been the
specific measures and diagnostic tests that have become commonplace. Physician and public awareness of these major risk
factors for heart attack and stroke has led to the reduction in
premature morbidity and mortality from these disabling and
lethal diseases. From 1971 to 1991, patients' awareness of hypertension has increased from 51% to 84% (12). The percentage of patients treated for hypertension has increased from
36% to 83% during this same time, even though achievement
of ideal blood pressure has only been 21% (12). Still, most patients are aware of "their numbers" and can quote their usual
systolic and diastolic blood pressure. In fact, because blood
pressure cuffs are found in virtually every health care provider's office and even in drugstores and grocery stores, regular monitoring is convenient and easy. In addition, most patients can name their own antihypertensive medication and
many can recite the major risk factors for heart attack and
stroke
overweight, smoking, and excessive salt and fat intake. Most patients are also aware of their "cholesterol numbers" and know there is a difference between good cholesterol
(high-density lipoproteins) and bad cholesterol (low-density
lipoproteins). Simple blood tests in clinic offices are routine,
and cholesterol screenings at health fairs, in shopping malls,
and at churches are common and popular. Public health efforts have been effective, and over the past 30 yr a reduction
in cholesterol levels through diet and medications has been
important in reducing the prevalence of heart attack and
stroke in the United States (13).
In contrast to this awareness of diagnostic measures for cardiovascular disease, there is relatively little use of simple spirometry by physicians to detect early COPD in asymptomatic patients or to gain objective measures of severity in symptomatic patients, and there is virtually no public awareness of this test. Very few general practitioners have spirometers in their offices, and most people in the general public have probably never had lung function tests. In fact, few patients with COPD know the importance of their lung function tests, nor can they recite "their numbers" for FEV1 or for FVC. Clearly, it will be a tremendous task to educate the general public and the medical community about this powerful and simple diagnostic tool.
A Nationwide Effort in COPD Prevention and Education
Because of the success of the educational and public health programs of the NHLBI, such as the High Blood Pressure and Cholesterol Programs and the NAEPP, we have models for instituting what may be an even greater public health initiative. The National Lung Health Education Program (NLHEP) is in its formative stages. The scientific results from the Lung Health Study have documented that early intervention during the asymptomatic portion of the natural history of COPD can prevent this disorder. Since abnormal spirometry in smokers predicts the top four causes of death (ischemic heart disease, lung cancer, stroke, and, of course, COPD), as well as the sixth most common cause of death (pneumonia), this intervention prevents much more than COPD. Screening for early airflow obstruction among smokers will identify those at increased risk for these other significant causes of death. In developed countries, of smokers who die in middle age, approximately 50% die from diseases produced by cigarette smoking (14). Almost all these deaths are from disorders that can be prevented through smoking cessation and other interventions. Preventive prospects will be greatly enhanced by early screening of asymptomatic smokers to identify those at greatest risk. As work by the NLHEP evolves, a worldwide consensus on COPD identification and management is likely to follow. This new educational program, NLHEP, will be aimed at primary care physicians and other front-line health care providers, such as physician assistants and nurse practitioners. All smokers and individuals with symptoms of lung disease will receive screening spirometry. Then the appropriate intervention can be instituted. This will frequently include smoking cessation even at very high levels of intensity and, in selected cases, will include further screening for diseases such as lung cancer, heart disease, and stroke, with appropriate additional interventions for these disorders as well. About 20 to 25 yr of life are lost for smokers who die in middle age (14). These deaths are chiefly from the disorders that can be predicted by abnormal spirometry in smokers. The opportunity for a real revolution in public health is possible through this program.
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SMOKING CESSATION AND PREVENTION INTERVENTIONS |
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Although smoking remains the leading preventable cause of death and disability in the United States (15), dramatic reductions have occurred in the rates of adult cigarette smoking during the past 35 yr. Since the 1962 Surgeon General's report on the risks of smoking, rates of smoking have declined from 42% to 26% of the adult population (16, 17). Over the past four decades medical researchers have continued to document the case for the profoundly destructive contribution of smoking to heart and lung disease, just as behavioral researchers have made dramatic progress in understanding the nature and treatment of tobacco use.
As a result of this research, we now know that smoking has both a significant pharmacologic and a persistent behavioral component. The active ingredient of tobacco, nicotine, has been shown to be powerfully addictive (18). Research has revealed that the mood-regulating and pleasurable properties of tobacco are highly reinforcing, and quickly become associated with all aspects of everyday life, such as eating, drinking, socializing, and working (19, 20). Smoking initiation and prevalence are associated with all aspects of social behavior, and vary by gender, race, education, and income level (16, 21, 22). Based on these research findings, creative interventions to prevent smoking and reduce smoking rates have been developed, many with the support of the DLD and the NHLBI (23). These projects have ranged from broad community-based interventions designed to modify multiple health risk behaviors, such as the Minnesota Heart Health Project, to intensive clinic-based interventions designed to help individual smokers quit and remain abstinent. Research conducted over the past 10 yr has focused particular attention on populations of smokers with special concerns. Smoking cessation interventions for pregnant smokers, minority smokers, and parents of children with asthma have yielded promising results and important new insights into the best venues and strategies for targeting smoking interventions to these populations.
Community-based Interventions
Community-based approaches to improving health behaviors
in populations are predicated on the rationale that the majority of health risk in a population is due to small elevations of
risk factors in the majority, rather than extreme levels of risk
in a few (24). For this reason, even modest changes in the population rate of a risk factor
such as smoking
can yield significant reductions of health risk at the community level, resulting in reduced disease incidence, morbidity, and mortality.
Community-based intervention studies, such as the Pawtucket
Heart Health Program (25), the Stanford Five Cities Project
(26, 27), and the Minnesota Heart Health Study (28, 29), attempted to reduce population rates of multiple risk factors, including smoking, hypertension, and lipid levels. Other school-
and community-based programs have focused exclusively on
risk factors in children (23, 30). Strategies employed in
these interventions to prevent smoking initiation and promote
smoking cessation included social marketing through mass
media and health education materials, school-based programs,
public screenings, training for health professionals, worksite
programs, and community contests. While the results of these
interventions in reducing cardiovascular morbidity and mortality have been disappointing, some success has been reported
in decreasing smoking initiation and smoking prevalence. The
Minnesota Heart Health Program (MHHP) conducted a smoking prevention program called The Class of 1989 in Minnesota
schools in 1983, 1984, and 1985 (36). From 1983 to 1987, the
MHHP sponsored health behavior programs in the intervention schools. The smoking prevention program consisted of
small-group discussions, use of peer leaders, role playing, and
skills training to resist social pressures to smoke. In addition,
these school-based programs were being conducted against
the backdrop of the overall MHHP community intervention. Outcome data were drawn from an annual student survey collected in intervention communities and its matched reference
community. These assessments included students' self-reported
smoking history and, in 1986 only, salivary thiocyanate samples for biochemical validation. Cross-sectional and cohort smoking data were analyzed for each year from 1983 to 1989. At
baseline there were no differences between the matched communities in self-reported smoking prevalence or intensity; however, throughout the follow-up period, the smoking rates for
the intervention communities remained significantly lower than
those in the reference communities. By the end of high school,
14.6% of the intervention students were weekly smokers, compared with 24.1% in the comparison communities (Figure 1). This study illustrates that complementary community- and
school-based smoking prevention programs that utilize multiple intervention strategies and components can significantly
reduce smoking initiation rates in teenagers.
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Clinic-based Interventions
Clinic-based intervention programs are generally targeted at individual smokers who are motivated to quit smoking and who seek intensive, structured assistance in their cessation effort. Clinic-based intervention programs reflect the most structured and intensive forms of smoking cessation intervention, and as a result, such interventions have achieved among the highest quit rates (typically 20-25% one-year cessation rates) (37). These programs generally utilize cognitive-behavioral strategies, with a focus on developing skills and coping strategies to prevent relapse to smoking. Most clinic interventions are group-based, multi-session, and multi-modal, with program content that addresses stress management, weight control, and relapse prevention.
Concerns about postcessation weight gain have been of particular interest to smoking cessation researchers (38, 39). In the past 10 yr nicotine replacement therapy (NRT), either nicotine polacrilex or the nicotine transdermal patch, has increasingly become an important adjunct to these programs (40). The use of NRT during attempts to quit smoking has been shown to significantly improve rates of sustained cessation, particularly when combined with a structured, clinic-based intervention. This intervention strategy was selected as the model for one of the most important and ambitious studies undertaken and mentioned previously, the Lung Health Study (LHS). This was a randomized clinical trial designed to test the hypothesis that smoking cessation intervention and the use of an inhaled bronchodilator (ipratropium bromide) will slow the decline in lung function in smokers with mild to moderate chronic obstructive lung disease (43). Close to 6,000 men and women with early expiratory flow impairment participated in the treatment group, which included an intensive pharmacobehavioral smoking cessation intervention offered at the 10 LHS clinical centers. Eligible participants were men and women between the ages of 35 and 60 yr who were regulate cigarette smokers and who were found to have mild to moderate airflow obstruction on spirometry at randomization, with an FEV1/FVC ratio less than 70%, and FEV1 between 55% and 90% of predicted. All participants had to express interest in quitting smoking and willingness to consider enrolling in a smoking cessation program. After providing informed consent, participants were randomly assigned to one of three treatment groups: usual care, special intervention with active drug, or special intervention with placebo. In the 10 centers, a total of 5,887 people were enrolled in the study: 1,964 persons into usual care, and 3,923 into special intervention. The usual care (UC) group returned annually for spirometry examinations only. All special intervention (SI) participants were offered a 12-wk smoking cessation program and were asked to return for visits with a health educator every 4 mo in addition to the annual spirometry tests. Cotinine and expired air carbon monoxide samples were collected at annual visits to provide chemical verification of smoking status.
Previous research has suggested that smokers with COPD may have greater difficulty than other smokers in quitting smoking (44). Chronic smokers with early COPD may need intensive behavioral and pharmacologic support to successfully quit smoking. For these reasons the LHS Smoking Cessation Group Program was designed to achieve high sustained cessation rates by combining the strongest program elements available at the time the study started. This 12-wk, 13-session program intervention used a behavioral social learning approach designed to teach smokers the skills necessary to avoid relapse and sustain nonsmoking. This was combined with a pharmacologic approach that utilized nicotine gum (nicotine polacrilex) to assist participants in coping with nicotine withdrawal and cravings while they acquired these new skills. Nicotine gum was provided free of charge throughout the program, and tapering was not initiated until at least 3 mo after cessation.
Drawing on the research of Mermelstein and others (45, 46), the LHS intervention program placed great value on the importance of social support for the initiation and maintenance of smoking cessation. Participants were encouraged to bring a spouse or other support person with them to the intervention program. Family members, friends, or even coworkers were invited to quit smoking along with the participant. Nonsmoking support persons were instructed on how to best assist the participant's efforts at smoking cessation. The contribution of this aspect of the intervention is supported by the finding that those LHS participants who lived in nonsmoking households and those who attended the initial intervention meeting with a support person were also more likely to remain nonsmokers throughout the first year (47).
At the first 4-mo follow-up, 46.4% of the participants self-reported not having smoked since their quit day. By 1 year 40.1% of the SI participants reported nonsmoking compared with 10.7% of the UC participants. Using biochemical validation, these 12-mo rates dropped to 33.9% compared with 8.7% quit (48). Participants' long-term smoking status was classified as either continuing smokers (smoking at each annual visit), intermittent smokers (nonsmoking at some annual visits), or sustained nonsmokers (nonsmoker at each annual visit). Figure 2 shows the biochemically validated smoking cessation rates throughout the study. Because the sustained nonsmoker category reflects only those individuals who quit during the initial cessation program and maintained their nonsmoking status at each subsequent annual visit, this category naturally declined over the course of 5 yr. By the end of the study approximately 22% of SI participants had remained nonsmoking, without a relapse, compared to about 5% of the UC participants. Cross-sectional rates of nonsmoking reflect the number of participants not smoking at a given annual visit, regardless of their smoking status at a previous visit. Cross-sectional rates of validated nonsmoking for SI participants were about 35% at the first annual visit and increased only slightly over the study, while cross-sectional rates for UC participants doubled from 10% to 20% by the fifth annual follow-up.
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In the LHS the rate of pulmonary function decline was dramatically slowed by sustained nonsmoking, while continuing smoking resulted in a decline of 63 ml/yr from the first to the fifth year of follow-up. The total average decline over the 5 yr in FEV1 was 301 ml in the continuing SI smokers, compared with a loss of 72 ml in the sustained nonsmokers (49). The LHS demonstrated that an intensive smoking cessation intervention offered to smokers identified with early pulmonary impairment could result in substantial rates of sustained smoking cessation and significantly slow or even reverse the obstructive lung damage caused by smoking.
Interventions for Pregnant Smokers
Smoking during pregnancy increases the risk of infant morbidity and mortality (50). Maternal smoking is associated with increased likelihood of respiratory infections and asthma in young children (51). For these reasons effective smoking cessation interventions for pregnant women have the potential for significant public health benefit. Secker-Walker and colleagues (54) conducted a randomized clinical trial that evaluated the efficacy of an individualized smoking cessation program added to regular obstetrical care. Six hundred women being seen in public and private prenatal care settings in Vermont were randomly assigned to either usual care (usual MD or midwife advice) or usual care plus individualized counseling. This individualized intervention was delivered by trained counselors during normal prenatal care and was designed to increase maternal motivation and self-efficacy for quitting smoking. Although quitting rates during pregnancy were not significantly different for the two groups, at the long-term follow-up, self-reported quit rates were significantly higher for women in the intervention group (14.5%) compared with women in the usual care group (2.5%).
In a substudy conducted concurrent with this smoking cessation intervention, Secker-Walker and colleagues (55) examined the value of individualized counseling to prevent smoking relapse among those women who spontaneously quit smoking in early pregnancy. Women seen at the clinics who reported having quit smoking prior to their first prenatal visit were randomized to either usual care of individualized counseling designed to prevent smoking relapse. Women were given counseling at baseline on the benefits of remaining abstinent, provided with a specially developed booklet, and counseled again at 36 wk and 6 wk postpartum. Outcome data showed no differences in relapse rates between women in the intervention group and the control group during pregnancy or postpartum; however, women in the intervention group reported significantly more abstinent days (199 d) during their pregnancy compared with women in the control group (166 d).
These promising studies support the value of continuing to develop programs that integrate smoking cessation interventions into regular prenatal care; however, they also highlight the difficulty of achieving and sustaining smoking abstinence, even when the importance of quitting smoking is clear and immediate.
Interventions for Minority Smokers
Chronic health problems disporportionately effect low-income and minority communities (56). Behavioral risk factors such as smoking contribute to this excess risk; however, until recently little research has been available about smoking behavior and effective intervention strategies within these communities. In 1988 the NHLBI sponsored a Request for Applications (RFA) for projects that would evaluate smoking cessation interventions for minority smokers. The unique and innovative projects resulting from this initiative included a neighborhood intervention to change smoking rates in an African-American community in St. Louis, Missouri, American Indians (57), a school-centered program for minority parents in Los Angeles, and an ethnically sensitive community program for Hispanic smokers in New York (58). Another project, Heart, Body, and Soul, used a spiritually-oriented, church-based intervention to promote smoking cessation among African-American parishioners in Baltimore (59). This multimodel intervention actively engaged the parishioners and the pastors in the development and implementation of the interventions, assuring that these interventions would be relevant and culturally sensitive to the needs of the target population. The investigators reported that they found no significant difference in the self-reported and biochemically validated quit rates in the control and intervention populations at the end of the 1-yr follow-up; however, smokers in the intervention churches were more likely to report positive progress in their readiness to quit smoking. In addition, the organizational structure, advisors, and communication channels developed during this intervention have left a stable community framework for continuing to tackle community health issues such as smoking.
Interventions for Smoking Parents of Children with Asthma
Environmental tobacco smoke (ETS) poses a particular risk for children with asthma. Acute exposure to smoke can trigger asthma attacks, and chronic exposure to smoke in the home environment can lead to increased respiratory infections, worsening symptoms, and decreased pulmonary function (53, 60, 61). Parents of a child with asthma who smoke can create a home environment that is toxic to their child's health and well-being (62). Hovell and associates (63) conducted a randomized clinical trial of a behavioral intervention designed to eliminate or reduce asthmatic children's exposure to cigarette smoke in the home. Ninety-one families with at least one smoking parent were randomly assigned to either a monitoring control group, a usual care group, or an experimental/ counseling group. In families randomized to the experimental group, the targeted parent and child attended a series of counseling sessions over a 6-mo period. These sessions were based on behavior modification techniques, including self-monitoring, designed to modify parental smoking patterns. The overall goal of the counseling was to achieve reductions in the child's exposure to ETS.
Changes in smoking behaviors and reductions in household smoking were assessed over a 1-yr period. Measures included parent's self-reports of their child's exposure and an environmental monitor placed in the home to measure nicotine levels (used to validate parental reports). Outcome results found that exposure decreased in all groups; however, the experimental group achieved the greatest reductions, with a 79% decrease in the children's exposure to parental smoke, compared with 34% for the usual care group and 42% for the monitoring control group. At the end of the follow-up (12 mo), only the experimental group showed a sustained decrease in the children's exposure to ETS from all smokers in the home (44% decrease). Although this study was not designed as a smoking cessation study, it is noteworthy that there was a trend for higher cessation rates in the experimental parents, compared with monitoring or usual care parents (19% versus 7% and 3%, respectively). A 2-yr follow-up found that reduced smoking exposure was sustained in the experimental group (64). This study illustrates a promising new avenue for both reducing ETS exposure among children with asthma, as well as a potential "teachable moment" for promoting smoking cessation in parents.
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ASTHMA EDUCATION AND PREVENTION EFFORTS |
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Asthma is a perplexing disease that presents a paradox. On the one hand, more is known about basic mechanisms of disease and effective approaches to clinical treatment than ever before. On the other hand, over the past decade the prevalence of asthma morbidity and mortality has been on a steady incline worldwide (65). While the disease is increasing across all ages, data have illustrated "pockets" of asthma prevalence in inner-city, low-income areas of the United States (66). One of the logical conclusions to be made from the data is that clinicians are either not providing state-of-the-art care for the disease, or if they are, patients are not following the recommended therapies. Thus, services need to be available and clinicians need to improve their communication skills to help patients manage asthma effectively and lead active and unrestricted lives. At least two factors uncovered in research in the recent past (reviewed by Nadle and Busse in this supplement) have influenced how asthma management is viewed.
One is a greater awareness that asthma is a chronic inflammatory disease and that correct treatment can greatly improve quality of life and prevent fatal attacks (67). As a result, there has been a shift in first-line pharmacologic therapy. Rather than relying primarily on bronchodilating agents to treat symptoms, the emphasis now is on treating the underlying inflammatory disease to prevent symptoms. Inhaled anti-inflammatory agents have become the mainstay therapy for asthma management (67). There is national consensus on the management of severe exacerbations (70) and an international initiative for asthma identification and management (71). These consensus and educational documents recommend regular airflow monitoring by patients with hand-held peak flow meters, which has added a new dimension to self-management strategies for asthma control. Most recent asthma education materials now include simple instructions on using peak flow meters at home and interpreting variations in airflow as measures of asthma stability and severity.
A second factor influencing asthma management is recognition of the role of psychosocial factors in the onset of exacerbations, the ability of patients to control them, and the use of health care (66, 72). It has been noted fairly recently that mortality from asthma appears to be of two types (73, 74): slow- and sudden-onset fatalities. Whereas little is known regarding death from sudden-onset asthma, patients who die from episodes that are slow to develop appear to share some commonalities, including disrupted or disorganized social situations and psychological stress or distress. It has been suggested that the latter patient does not seek regular medical care or comply with the medical regimen when it is available. Further, such a patient is likely to delay obtaining help when symptoms progressively worsen. Data have increasingly suggested the important influence of social situations in day-to-day management in patients of all profiles. Subsequently, more attention to education of family members, personnel in the school and work place, health professionals, and the public at large has been undertaken in efforts to control asthma. However, since the flourishing of interest in asthma prevention and education in the mid-1970s, the focus of intervention efforts and research assessing them has been on management by patients themselves. Prior to 1970, there were no accepted definitions of asthma self-management or descriptions of patient management tasks. A number of studies undertaken subsequently began to evolve the patients' behaviors that would help them reduce the impact of disease on their daily lives.
Impact of Asthma Patient Education
A steady line of investigation in asthma education has increased the understanding of disease management by patients and interventions to enhance it. A first generation of asthma studies explored dimensions of management by patients and their partnerships with clinicians in controlling disease (75) (Table 1). This body of work moved the field forward in at least three ways. First, general agreement about the categories of patient skills needed to effect disease control was evident in the findings (83, 84) and included those related to prevention of episodes, attack management, and social relationships. Second, evaluation of model programs designed to enhance patient skills suggested that significant benefit to patients could be realized, including: expanding their use of effective management strategies; reducing their feelings of anxiety; decreasing episodes of symptoms; improving school attendance and academic performance; enhancing participation in physical activities; and decreasing use of hospital and emergency department services (77). Third, initiating work in the area stimulated other investigators to undertake research on specific aspects of self-management and interventions to enhance it. Efforts were undertaken by NHLBI, voluntary and professional organizations, and the pharmaceutical industry to make interventions widely available to those interested in establishing self-management programs based on these early models and resulted in the introduction of asthma education into hundreds of clinics nationwide.
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A second generation (85) of asthma studies expanded the research focus to settings beyond the clinic and to populations of adults (86) (Table 2). Again, results suggested benefits to be derived from interventions based on sound social-behavioral theory and effective therapeutic regimens.
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More recently, research related to asthma education has examined interventions provided by various types of educators in a range of settings, using differing learning formats, for specific populations and for patients of all ages. Findings from additional trials conducted in the past decade for children and adults indicate that we have greatly increased our ability to intervene effectively (89). The data generated from more than a decade of sustained work also have enabled better understanding of the correlates and predictors of self-management. Demonstration programs have specifically focused on self-management education on disadvantaged minority populations. Research projects are testing innovative, culturally sensitive models ranging from community organization approaches (110), school-based activities in concert with home visitors (111), to comprehensive clinic programs that integrate asthma education into routine pediatric care (112, 113). The goal of these efforts has been to develop replicable programs, especially to meet the needs of high risk populations (114).
National Asthma Education and Prevention Program
In 1989, the NHLBI, in collaboration with 31 voluntary and
professional organizations and units of the federal government with an interest in asthma, established the National Asthma
Education and Prevention Program (NAEPP). This program
was developed from the premise that reducing asthma morbidity and mortality trends requires targeted patient, professional, and public education. It was modeled on the successful
national programs for high blood pressure and cholesterol
control. Its goals are to raise awareness that asthma is a serious chronic disease, to ensure the recognition of the symptoms
of asthma and its appropriate diagnosis, and to encourage use
of optimal management strategies, and provision of educational
programs. Its aim is to help establish effective partnerships between health professionals and patients, with the ultimate goal
being to enhance quality of life of the asthma patient, and decrease asthma-related morbidity and mortality. Working in concert, the participating organizations have developed the
National Guidelines for Diagnosis and Treatment of Asthma
(115, 116), the most recent version of which, in addition to
providing clinical treatment standards, has one chapter devoted to patient management education and another to patient self-monitoring. Clinical guidelines for treating asthma in
the elderly and in pregnant women have also been produced.
The NAEPP has created and disseminated materials for use
by a variety of health care professionals
nurses, physicians, educators, and pharmacists, and has mounted an extensive
media campaign to raise asthma awareness. NAEPP uses a
three-pronged strategy to reach its goal: (1) the use of intermediaries (e.g., the NAEPP Coordinating Committee member organizations and other groups); (2) establishment of the
science base (e.g., Expert Panel Report: Guidelines for the Diagnosis and Management of Asthma); and (3) organization of
public communications (e.g., the NAEPP Coordinating Committee media campaigns to encourage undiagnosed people
with asthma to seek care). The NAEPP provides a model for mobilizing stakeholders for lung disease prevention, education, and control from across the country and holds particular
significance for COPD control.
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FUTURE DIRECTIONS FOR RESEARCH IN PREVENTION AND EDUCATION |
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Advances in prevention and education of the past decades have created rich opportunities for further basic, clinical, behavioral, and educational research. Basic and clinical research contribute to the capacity to develop effective prevention and education in lung disease.
COPD
Research is needed to determine how to distinguish COPD clinically from asthma. This distinction is needed for diagnosing and particularly for treating chronic lung disease in older adults. There appear to be two peak periods of onset of asthma: between the ages of 5 to 15 yr and between 40 and 60 yr. Diagnosing asthma is easy in selected cases, but the distinction between asthma and COPD is not so clear-cut in others. Further research also is needed to study the natural history of COPD and asthma, to characterize the diseases epidemiologically and define them clinically. Progress in these areas is important to potential screening and preventive efforts. We need to know much more about the natural history of COPD, particularly its early manifestations in adolescents and young adults. We also need to know more about the complex interaction between genetic predisposition and environmental insults in both asthma and COPD.
Studies are needed to determine features of pulmonary rehabilitation programs that can be successfully established in community settings that are less specialized than the tertiary health care institutions where they now are most common. More points of access are required to reach and assist individuals now overlooked or without sufficient care. Pulmonary rehabilitation programs are well established as effective therapeutic endeavors for improving quality of life for patients with end-stage COPD. However, because these programs often have been developed in tertiary health care institutions where other specialized procedures, such as lung transplant and lung volume reduction surgery, are done, it is difficult to find high-quality pulmonary rehabilitation programs in rural and other areas where specialized centers do not exist. For this and other reasons, only a small percentage of the potentially eligible population receive these useful interventions.
In COPD, an essential area for research is the role of spirometry screening in the general population, the population of smokers, and the population of individuals with symptoms of cough and shortness of breath. Studies are needed to define when screening programs will benefit public health endeavors. It is clear from the LHS that we can screen and that we can prevent the development of COPD, the fourth most frequent cause of death in people who smoke. Another important question is whether we can also prevent the top three causes of death, ischemic heart disease, cancer, and stroke, by early detection using spirometry. Studies are needed to determine the benefits of targeting those at greatest risk for selected interventions, including vigorous smoking cessation efforts.
Novel approaches to the treatment of COPD, using various self-management and behavioral interventions, need to be explored in light of the changing health care system. Professional education of all health care providers will be vital in accomplishing prevention and disease control, and research will be required to determine how best to reach specialists, primary care physicians, nurse practitioners, and others. Finally, education of the public through the mass media and other approaches will also be essential and an important area for research.
Smoking Cessation and Prevention
In recent years public awareness about the risks and costs of smoking for smokers and nonsmokers alike has increased exponentially. Workplace smoking policies, public restrictions, increased cigarette taxation, and social and legal sanctions have all contributed to the downward trend in smoking prevalence. Rates of smoking initiation remain too high, however, with evidence that smoking prevalence may be increasing in some groups. Additional research is needed to develop stronger, more persistent interventions to prevent smoking initiation. With the increased number of organized medical care delivery systems, new opportunities exist for institutionalizing regular smoking prevention and cessation advice into all contacts with the health care system. Public health experts agree that preventing teenage smoking is one of the most important priorities for improving our nation's cardiopulmonary health. Preventing the onset of smoking is the key to reducing the number of dependent adult smokers and, thus, the long-term health costs of smoking. Continued research is needed on innovative strategies to "inoculate" young people (particularly teenage girls) to the social pressures (including advertising and peer influence) that have been associated with smoking initiation (21, 117).
Although most smokers who quit do so without the benefit of formal smoking cessation programs, we have limited understanding of how to best motivate and sustain these self-quitters. Research is needed to develop and evaluate broad-based, low-cost interventions that encourage and motivate those smokers unlikely to seek formal assistance. Such interventions might best be integrated into existing community programs or managed care environments.
Smoking rates have not declined at the same rates for all ethnic and economic groups. Smoking remains highest among the lowest income groups, who are also at the highest risk for most chronic cardiopulmonary diseases. More information is needed about how economic, cultural, ethnic, biological, and behavioral differences promote smoking and/or discourage quitting, and how best to intervene to reduce smoking in low-income, minority populations. Special populations, such as persons with lung or heart disease, pregnant women, children, and people with asthma remain at particular risk for exposure to cigarette smoke. Even costly, intensive interventions might be cost-effective in such populations. Recent studies suggest that interventions to change smoking behavior in these groups are promising and warrant further investigation.
The changing social and legal environment has increasingly moved to support the rights of nonsmokers to a smoke-free environment. These increasing restrictions on smoking behavior may be powerful motivators that encourage smoking cessation. Additional research is needed examining the impact of such legislation on the rates of smoking initiation and smoking cessation.
It is well known that physician and other professional counseling to quit smoking is an effective, low-cost strategy to promote smoking cessation. Additional research is needed on how to increase the frequency, quality, and consistency of such counseling. Further, exciting advances have been made in recent years in the development of pharmacologic aids to smoking cessation efforts, but little is known about how these products are best used outside of clinic or medical care settings. With an increasing number of such products available over the counter, additional research is needed on how to encourage optimal use by consumers.
Asthma
The need for educational and behavioral research in asthma is significant. Tailored pharmacologic and behavioral interventions are needed for several specific overlooked populations with asthma, including older adults, especially women (the last comprise well over half the population of adult patients). Studies must confirm the benefits and most effective types of interventions delivered under given sets of circumstances.
Research also is needed to determine which components of patient education are most effective. Most self-management studies include multiple components investigated together without much attempt to separate and determine which elements make the most difference. It is quite possible that for some patients a very focused intervention could be effective, foregoing a more comprehensive approach.
Of the three categories of management competency for patients identified in the first generation of self-management studies, all of which have significant psychosocial aspects, prevention and attack management have received the greatest amount of attention in model programs (118). Further, it is evident in research that patients' perceptions of severity correlate strongly with their health care use (119). Some exploratory work suggests perceived severity is more strongly associated with utilization of health services than is evaluated severity (120). Nonetheless, as noted, findings from recent research point to the importance of the somewhat overlooked category of psychological factors/social relationships. For example, intra-family interaction and support have been shown to influence a child's ability to self-manage (121), and adults' perceptions of the level of social support available to them affect asthma control (118, 124). Peer and important reference groups have been shown to exert influence. For example, Forero and colleagues (125) showed that adolescents with asthma smoke at the same rate as their peers. Pachter and Weller (126) showed the level of acculturation to be a factor in disease self-management, and Haire-Joshu and coworkers (127) illustrated that within an ethnic/racial group, social-economic status predicted differences in prevention efforts. Beliefs about medication (128, 129), often linked to one's social environment, have been associated with the degree of one's compliance with the regimen as well as other aspects of self-management. Social relationships at school (88) and work (118) have been discussed as central to management behavior and to perceptions of the impact of asthma on the quality of one's life. However, few data are as yet available, particularly regarding adults, to describe in any detail the nature of social interactions and relationships that lead to successful disease control.
Another area noted as important in patient self-management is peak flow monitoring (PFM), yet little is known about it in practice. Several studies (107, 130) have compared symptom monitoring and peak flow monitoring by patients with mixed results. Findings of some suggest that improved outcomes can be realized through PFM. Data from others suggest there is little difference between the two forms of self- observation.
Another area of concern is in the patient-clinician relationship. In a chronic disease like asthma, the ongoing partnership between health professional and patient is crucial to control. Successful therapy and management requires frequent interaction, candor, and mutual problem-solving (133) and clinicians need to be skillful in particular techniques that enhance communication (134). Recent work (135) has suggested that clinicians who learn how to communicate with their patients with asthma and provide a focused and sequenced series of educational messages save time in the office visit and have patients who experience fewer symptoms. The combination of receiving education from a skillful professional and using anti- inflammatory medicine appears to be especially powerful in symptom control and reducing health care use.
Yet another area important to advancing asthma self-management and worthy of attention in research concerns outcomes measurement, that is, methods for assessing the effect of interventions. In 1993, an NHLBI workshop to consider appropriate outcomes of asthma treatment and education was conducted and deliberations of participants were published in a special issue of this journal (136). The general conclusions of the group were summarized by Bailey and colleagues (137). They noted that consensus is needed on the definition of several outcomes commonly used in asthma research, and where a specific measure has a fairly precise definition, standardization is needed. In the ensuing years measurement work has progressed but, in large part, the workshop conclusions still apply. One effort to further explore outcomes in asthma management was the NHLBI Task Force on Cost Effectiveness, Quality of Care, and Financing of Asthma. The Task Force deliberations, recently published in American Journal of Respiratory and Critical Care Medicine (138), provides data describing actions within health care organizations that can be targeted to improving asthma outcomes. The report describes the medical care context in which patients attempting to control asthma must function.
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Footnotes |
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Correspondence and requests for reprints should be addressed to Noreen M. Clark, University of Michigan School of Public Health, 109 S. Observatory St., Ann Arbor, MI 48109-2029.
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References |
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