The Role of Education
Education is an important component of outreach for the prevention and control of allergen-induced diseases. It is fundamental to the knowledge base of those who either suffer from such diseases or treat them, and provides the foundation for behavior. Education that improves awareness of health risks is basic to disease prevention and health promotion; by disseminating information to health care providers and to patients, prevention of diseases associated with indoor allergens becomes not only realistic but may offer a cost-effective means of reducing morbidity. Many questions remain unanswered, however, as to the best way or ways to disseminate information and provide such education.
This chapter discusses the role of education in the control and prevention of allergen-induced diseases. It also reviews educational tools and materials for use in these efforts and makes recommendations for future research and for addressing the educational needs of patients, health care providers, and the general public.
EDUCATING PATIENTS AND THE GENERAL PUBLIC
Educational programs involving the control and prevention of asthma far outnumber those developed for other allergen-induced diseases. By necessity, therefore, much of what is known about the effects of education with these diseases has been derived from studies on asthma. In the late 1960s, approximately two dozen residential centers in the United States specialized in the treatment of childhood asthma. Publications from the
Children's Asthma Research Institute and Hospital (CARIH) in Denver have been credited with establishing the background for asthma patient education and self-management (Decker and Kaliner, 1988). Those publications show the emerging awareness that patients and their families first had to learn about asthma management skills and competencies; patients then had to demonstrate that they could perform these skills to help control the disorder. This approach reflects the learning-performance distinction inherent in social learning theory (Bandura, 1986). Effectively performing management skills achieved the aim of permitting patients to become partners with their physicians in controlling their asthma.
By the mid-1970s, it was apparent to many health professionals in the United States that greater emphasis had to be placed on developing and evaluating self-management programs for asthma. By the end of the decade, more than two dozen such "first generation" programs for childhood asthma had been developed and evaluated. A similar number, many of which were still undergoing testing, had been created for adults. Recently, Creer and coworkers (1990) and Wigal and colleagues (1990) reviewed 19 education and self-management programs for childhood asthma (Table 8-1).
A number of positive results were obtained from the earliest of these programs. Significant findings included decreases in the number of attacks, in hospital use (including visits to hospital emergency rooms), in school absenteeism, and in asthma-related costs. Investigators also found increases in peak flow rates; improved attitudes toward asthma, including the perceived ability of patients that they could help control it; and improved self-esteem. The investigators who conducted these studies included both medical and behavioral scientists who had worked together for a number of years on the problems of asthma. Other positive findings suggested by Wigal and colleagues (1990) included the following:
In most instances, children and their parents became partners with their physicians in the management of the children's asthma.
The programs were applied in a broad array of settings, including those serving children from different socioeconomic backgrounds.
There was evidence that some dependent measures were valid and reliable, although flaws were found in many questionnaires.
Perhaps the greatest contribution of the programs was the development and availability of a variety of educational materials and techniques that could be used to teach self-management to patients and their families. Indeed, a veritable smorgasbord of programs is available to teach asthma management skills to patients (Creer et al., 1992).
The overall impact of these programs was positive, and virtually all of them were able to demonstrate the acquisition of knowledge about asthma and self-management skills. Yet most of these early programs did not assess
TABLE 8-1 Nineteen Self-Management Programs for Childhood Asthma
A.C.T. for Kids
Asthma Summer Camp Program
Children's Hospital of Pittsburgh
Community Program for Childhood Asthma
Educational and Exercise Program
Family Asthma Program
Living with Asthma
Self-Care Asthma Education
Self-Care Rehabilitation in Pediatric Asthma
Self-Help Education-Exercise Program (CASH-IN)
Teaching My Parents/Myself about Asthma
You Can Control Asthma
SOURCE: Wigal et al., 1990
the degree to which patients applied the skills (Creer et al., 1990). The procedures and methods used by children and their families to bring an attack under control were not assessed; neither were the factors that led to an amelioration of the attacks. Also not examined was the relationship between (1) reduced hospitalizations and emergency room visits and (2) the behaviors recommended by physicians and in educational programs. It has yet to be determined whether children who learn these self-management skills can and will apply them to manage their asthma attacks more effectively. Although some studies show that people who learn management skills use them in the short term, it is less clearly documented that these behaviors persist over the long term.
Not all educational programs on asthma have been successful. For example, in an educational program consisting of classes conducted in group settings, only 38 percent of a group of Chicago inner-city children with asthma and their families attended one or more of four scheduled classes (Shields et al., 1990). The median household income of these families was 6 percent below the overall city median of Chicago. Among the participants who remained for the entire study period (29 months), there was no significant improvement (reduction) in postintervention health care utilization for respiratory-related illnesses, and the program did not achieve its goal of decreasing emergency room visits for children with asthma.
The failure of this program probably hinged on two elements: implementation and program effectiveness. Program implementation was difficult because it was offered to all children with asthma, regardless of severity; those with mild asthma may have been less motivated and less likely to benefit than those with more severe disease. Program effectiveness suffered primarily because the program addressed knowledge rather than behavior modification, and specific behavior modification techniques such as reinforcement and contingency contracting were not utilized. Moreover, the socioeconomic, educational, and ethnic profiles of the families may have contributed to problems associated with both program implementation and effectiveness. Thus, future programs designed to teach patients how to manage and control their allergic diseases should (1) include a strong behavioral component, (2) be targeted to key groups who will actively participate and benefit from them, (3) be monitored to ensure that immediate goals are reached, and (4) be validated for specific socioeconomic groups before implementation.
Self-monitoring of asthma by objective means appears to be effective for some patients. In a study of adults with asthma, the use of home monitoring of pulmonary function played a significant role in both decreased bronchial hyperresponsiveness and increased compliance with medication regimens (Beasley et al., 1989b; Woolcock et al., 1988). To explain such findings, the authors suggested that once a patient observed an improvement in daily readings, he or she was more likely to take medications as prescribed. In a more recent study of 39 adults with asthma, home peak flow monitoring in association with a treatment plan was used to assess individuals over the course of 6 months. Substantial improvement was seen in both subjective and objective measurements of severity; however, no attempt was made to identify which features of the management plan were responsible for improved control of symptoms. Thus, it was unclear if regular assessment of peak flow, adequate inhaled corticosteroids, education of the patient, prevention of acute episodes, regular clinic attendance, or improved adherence to prescribed regimens had separately or collectively contributed to the overall improvement that was noted.
Allergen Avoidance and Environmental Control
The role of allergen avoidance is a primary method of promoting good health and controlling diseases that are initiated or exacerbated by exposure to indoor allergens. For example, as decided previously in this report, avoidance is considered an important method of treatment for dust mite allergy (Buckley and Pearlman, 1988; Melan, 1972) and is also associated with improvement of asthma when rigorous methods of avoidance are employed (Murray and Ferguson, 1983; Platts-Mills et al., 1982). Box 8-1 presents a concise example of instructions for reducing exposure to house dust mites.
BOX 8-1 University of Virginia Allergy Clinic Instructions for Reducing Exposure to House Dust Mites
House dust mites require humidity (greater than 50 percent relative humidity) and warmth (above 70° F) to grow. Because mites avoid the light and because surfaces dry out rapidly, mites flourish in mattresses, bedding, upholstered furniture, carpets, pillows, and quilts. Under really humid conditions, mites will also grow in clothing, curtains (drapes) and any material.
Procedures to reduce dust mites should focus first on the bedroom because more time is spent there than any other room and it is generally easiest to change. However, in the long run, it is best to modify much of the house and this should certainly be considered when moving.
MEDIUM TERM OBJECTIVES
CHOICE OF HOUSES/APARTMENTS
In the study by Murray and Ferguson (1983), there was substantial reduction in bronchial hyperreactivity and medication requirements in 10 children who employed dust mite avoidance measures. The regimen was stringent and included removing carpets and sealing heating ducts, as well as removing from the home animals to which the child had positive allergy skin tests. It is important to note, however, that the more complicated the regimen, the less likely it is to be followed (Gaultier et al., 1980). As with programs directed toward other health behaviors, various types of education for allergen avoidance will need to be developed and tested in a variety of different settings and populations in order to appropriately assess their effectiveness.
Virtually all education and self-management programs develop the association between allergic factors and asthma. The aim is not only to identify potential triggers of acute episodes of asthma and allergic symptoms but also to teach the value of avoidance of stimuli. In this regard, many of the initial educational and self-management programs had weaknesses. Most programs, for example, contained only a basic outline of allergic factors and asthma and lacked a major description of the breadth of allergic stimuli and their potential role in precipitating asthma. No program incorporated an intervention component whereby experienced scientists visited the homes of patients and determined what allergic factors in their environments could induce or exacerbate asthma attacks. In addition, the
educational materials were uniformly applied to all patients, regardless of the unique characteristics of their asthma. It is anticipated that future educational programs will tailor self-management skills specifically to each patient in order to enhance both the acquisition and the performance of self-management competencies.
Computer-assisted instruction is another approach that has been tested. These methods may not be suitable for all patient populations, but one study of adults with asthma that used a supplemental computer-assisted reinforcement of instructions on dust mite allergen avoidance measures demonstrated better adherence than that achieved by the traditional instruction program (Huss et al., 1991). The study group was well educated and had been evaluated at a tertiary medical center; direct observation and a self-rating scale were used to measure adherence. Among the results was the finding that the observation checklist was a better discriminator of adherence among groups of patients than the self-rating scale, giving credence to the belief that these measures are superior to self-report methods for evaluating adherence.
Central to the hypothesis that education about allergen avoidance reduces morbidity of respiratory diseases such as asthma is the demonstration of threshold levels of exposure to common indoor allergens in individuals at risk. Recent progress in the immunochemical detection of common indoor allergens such as those associated with cats, dust mites, and cockroaches makes it possible to estimate exposure to these allergens and to begin to define threshold levels of exposure that will cause sensitization and increased symptoms. The example given earlier in this report describes the case of dust mites and the fact that researchers have suggested that exposure to greater than 2 µg of Der p I mite allergen (or 100 mites)/g of dust increases the risk that children will develop sensitization and asthma (Platts-Mills et al., 1991a). In a prospective study in a cohort of British children at risk of allergic disease because of family history, Sporik and colleagues (1990) reported a trend toward sensitization to dust mite allergen by age 11 with exposure at age 1 to more than 10 µg of Der p I/g of dust. The age at which wheezing first occurred was inversely related to the level of exposure at age 1 for those children who became sensitized.
These reports suggest strongly that in addition to genetic factors, exposure to certain allergens in early childhood is an important determinant of subsequent development of respiratory diseases such as asthma. If this is indeed the case, avoidance of indoor allergens and the role of education in promoting avoidance measures in the general public must necessarily assume a high priority. When public education is undertaken, however, it must be based on specific information about which allergens are troublesome in which circumstances, and for which children.
Not all studies have demonstrated beneficial effects on allergic diseases
from allergen avoidance (Burr et al., 1980; Gillies et al., 1987; Korsgaard, 1982). In these investigations, however, the avoidance procedures were less stringent than those employed in the ''successful" studies cited above. Some argue that it may be difficult to convince parents of children with mild to moderate asthma that more stringent methods are warranted.
Flaws in the First-Generation Programs
The most successful educational and self-management programs have attempted to integrate the expertise of medical and behavioral scientists. Analysis of data from these programs shows significant differences between experimental and control groups and pre-/postintervention within-group changes. This suggests that behavioral techniques are being used by patients to help manage their asthma.
From a behavioral point of view, first-generation asthma education and self-management programs had three major flaws. First, despite the data that have been obtained, knowledge is limited as to exactly what skills patients performed to help control their asthma. As noted by Kanfer and Schefft (1988), "The effectiveness of self-management therapies must be judged on process measures, not just product or outcome measures."
The second flaw was the failure of first-generation programs to incorporate what was then the current state of the art with respect to psychological techniques, into intervention protocols (Thoresen and Kirmil-Gray, 1983). The changes that have occurred in the dimensions of behavioral science over the past two decades (Creer et al., 1992; Sulzer-Azaroff and Mayer, 1991) require the integration of this knowledge into future programs.
The final flaw noted in earlier education and self-management (first generation) programs was their failure to incorporate proven methods and techniques of self-management. A strong experimental foundation underlies self-management methods that have been applied to change a number of health-related behaviors, including substance abuse, smoking, and overeating, and to treat chronic disorders, including diabetes, hypertension, recurrent headache, and chronic pain (Holroyd and Creer, 1986). With few exceptions, asthma education and self-management programs emphasized instruction provided to patients and assessed the output or outcome measures. They failed to analyze, on a point-by-point basis, exactly what skills or changes in behavior were incorporated by patients into their asthma management regimen.
EDUCATING HEALTH CARE PROVIDERS
Allergy curricula in medical schools vary significantly. Often the topic of allergy receives little attention—an unfortunate deficiency considering
the relationship of allergy to asthma. The high incidence of asthma, the serious impairment that can result from it, and the rising prevalence and mortality rates clearly show the need for broad education regarding its diagnosis and appropriate management. When one considers that a significant percentage of hospital admissions for asthma can be prevented by educating physicians and patients in the proper control measures, the need for an emphasis on education about asthma becomes obvious.
The education of the patient often comes primarily from the physician at the time of diagnosis and initiation of appropriate therapeutic regimens. Valuable components of this information include the nature of the allergic disease, the allergens responsible, appropriate measures for avoidance of allergens (when avoidance is possible), and optimum use of pharmacotherapy. Patients must also learn that, as in any chronic disease, there are unproven forms of therapy that are useless and sometimes expensive, and that employing such therapies may postpone the use of more appropriate and effective diagnostic and therapeutic regimens.
Studies show that when physicians' management and counseling behavior changes so does the behavior of their patients, and patients' health status improves (Inui et al., 1976; Maiman et al., 1988). Information is limited, however, and further research is needed to clarify (1) how physicians counsel and educate patients regarding allergens, and (2) how effective this is in terms of patient avoidance of allergens.
In general, less is known about the impact of providing education to health care providers than to patients and the general public. The recently developed Guidelines for the Diagnosis and Management of Asthma (NHLBI, 1991), however, emphasizes the importance of a partnership between the patient's family and the clinician. This partnership can be instrumental in helping patients understand asthma, as well as in learning and practicing the skills necessary to manage asthma. Evaluation of the effects of this national education program for physicians and health care professionals awaits its widespread dissemination and acceptance in the medical community.
Attempts to evaluate both the knowledge and behavior patterns of clinicians are critical to asthma management; however, developing outcome measures for such evaluations presents a challenge and deserves further research. In one negative study conducted by mailed questionnaire in which the outcomes were morbidity experienced by patients and their reported use of asthma-specific drugs, small-group education of general practitioners in the management of asthma was not effective (P. T. White et al., 1989). There was no difference between the morbidity of patients treated by the group of physicians receiving education and the group of patients treated by the control group. The deficiencies of the study included the use of mailed questionnaires, which are highly subjective; the lack of objective outcome measures; and the lack of direct evaluation of the subjects by the physicians.
Studies such as this emphasize the need for validated outcome measures to evaluate the effects of educational interventions for physicians and other health care professionals.
The basis for early recognition of allergic disease and development of a plan for therapeutic management depends on the appropriate education of the physician. The majority of health care of the allergic patient will be delivered by primary care providers who are also pediatricians, internists, or family practitioners. For more serious cases, a subspecialist in allergy-immunology (for allergy and asthma), or pulmonology (for asthma) may be required. Thus, allergic diseases should be emphasized at several levels of medical education. The mechanisms of allergic diseases should be taught during the basic science years of medical school, and the diagnosis and therapy of allergic diseases should be emphasized during the clinical years. Postgraduate training in family practice, pediatrics, and internal medicine should include the diagnosis and management of allergic disease, because of the high incidence and prevalence of these medical problems. Finally, fellowships in allergy and immunology provide the basis for subspecialty practice and of future faculty.
CONCLUSIONS AND RECOMMENDATIONS
A plethora of education and self-management programs exists for asthma and allergy. These programs are readily available to anyone through federal agencies such as NHLBI, or private groups such as the Asthma and Allergy Foundation of America, the American Lung Association, and pharmaceutical companies. Despite methodological weaknesses in the initial application of some of these programs, many have produced a number of positive results.
In the future, there should be closer linkage between the acquisition of knowledge about asthma self-management and the subsequent performance of these skills. This goal can be achieved by combining available educational components with additional elements as required to tailor specific programs to individual patients, who have varying degrees of severity of disease and are sensitized to different allergens. The result of such an approach should be not only more germane educational materials for patients but a reduction in the amount of information they need to learn and remember. Because memory repeatedly has been shown to be a significant factor in decisionmaking, particularly with an intermittent condition such as asthma, emphasizing basic self-management skills leads to better asthma management decisions. Better decisionmaking, in turn, enhances the performance of self-management skills (Creer, 1990).
There are few scientifically tested educational tools and materials designed to teach physicians and other health care providers about allergic
diseases and asthma, although numerous meetings, symposia, and other presentations address the role and contribution of indoor allergens to health problems and the importance of reducing exposure to these agents. There have also been few attempts to assess the long-term effectiveness of these materials or programs. As noted, Guidelines for the Diagnosis and Management of Asthma (NHLBI, 1991) presents not only detailed recommendations to diagnose and manage asthma but also emphasizes the importance of education and of identifying causative agents, such as indoor allergens, that may initiate and exacerbate asthma symptoms. Evaluation of the impact of these guidelines await their wide dissemination and acceptance. Meanwhile, efforts should continue toward improving what is already known to be effective in the prevention and control of allergic disease and disseminating that knowledge to health care providers, allergy patients, and the public at large.
Education is an important component in the prevention and control of allergen-induced diseases. Considering that a large percentage of hospital admissions for asthma can be prevented by educating physicians and patients in the proper control measures, the need for emphasis on education becomes obvious. By disseminating information to physicians, to health care providers, to patients, and to building design, construction and operations professionals (discussed in Chapter 7), prevention of diseases associated with indoor allergens becomes not only realistic, but may offer a cost-effective means of reducing morbidity.
In developing and implementing educational interventions, consideration should be given to identifying populations such as those with severe asthma who are more motivated and more likely to benefit from intervention.
Recommendation: Identify population groups most likely to benefit from educational and allergen-avoidance interventions. This effort should be based on an understanding of what allergens serve as risk factors for different individuals.
Socioeconomic, educational, and ethnic characteristics are important variables that should be considered in developing effective educational intervention programs. Programs that focus on these factors in tailoring self-management programs should greatly enhance both the acquisition and the performance of self-management competencies.
Recommendation: Develop focused educational programs for allergic populations with different socioeconomic and educational characteristics. Such programs should help patients:
understand allergic-disease risk factors;
predict the occurrence of such risk factors;
adopt behaviors required to avoid or control these factors; and
develop self-management skills to translate and use the knowledge they acquire to control allergic risk factors in different contexts.
A relapse prevention component should be included in these programs as well as follow-up studies to assess patient acquisition of allergy-related knowledge and the need for additional educational efforts.
Health Care Providers
Curricula vary in medical schools, often with little focus given to the topic of allergy diagnosis, prevention, and control—an unfortunate situation that should be corrected, especially considering the relationship of allergy to asthma. In addition, improved medical education is important because the majority of health care of the allergic patient is delivered by primary care providers, and the primary care provider is often the patient's main source of information about allergy control.
Recommendation: Incorporate the diagnosis and management of allergic diseases in the curricula and training materials for medical school students, residents in primary care practice, and subspecialists who will subsequently care for patients with allergen-based allergic disease. Nurses, physician assistants, and other non-physician health care providers should receive similar education and training.
Allergic disease should receive additional emphasis at all levels of medical education, across specialties, and in clinical practice. One mechanism to help promote this concept would be to enlist the support and interest of scientific and medical societies.
Recommendation: Encourage scientific societies with expertise in allergy, pulmonary medicine, public health, and occupational and environmental medicine to continue to assess and promote the development of primary prevention strategies for allergic disease.
Engineers, Architects, and Building Maintenance Personnel
As discussed in chapter 7, concerns about the design and operation of heating, ventilation, and air conditioning systems have focussed traditionally on the comfort of the building occupants and the efficiency of the
operation of the equipment. It is important that those with responsibility for the design, construction, and maintenance of buildings also have an understanding of the potential health effects associated with indoor environments, and the impact that design and operation of the systems can have on those effects.
Recommendation: Educate those with responsibilities for the design and maintenance of indoor environments about the magnitude and severity of diseases caused by indoor allergens.
Engineers, architects, contractors, and building maintenance personnel receive limited if any education about the health implications of the design, construction, and maintenance of buildings. Improved education in these areas is important to reducing the incidence, prevalence, and severity of adverse health effects associated with indoor environmental exposures.
Recommendation: Develop educational processes and accountability procedures for architects, engineers, contractors, and building maintenance personnel with respect to the health implications of the design, construction, and operation of buildings.
An interdisciplinary approach to the prevention and control on the adverse health effects associated with indoor exposures, including indoor allergens, is important. Such an approach should improve education in all areas of expertise and result in reduced health risks for building occupants.
Recommendation: Develop interdisciplinary educational programs for health care and building design, construction, and operations professionals.