Introduction
Asthma
A definition of asthma was distilled from a description by the National Institute of Heart, Lung, and Blood (1) Asthma is a chronic condition that affects the airways and lungs. The airways normally carry air unimpeded in and out of a person’s lungs. If a person has asthma, however, the inside walls of the airways can become inflamed or swollen. The inflammation makes the airways sensitive so that they may react to stimuli to which a patient is allergic or finds irritating. When the airways react, they narrow; less air flows through the airways into lungs and, conversely, trapped air cannot be expelled. At the most elemental level, this means that the air cannot at the site of the alveoli transport oxygen to or remove carbon dioxide from the blood stream. This causes symptoms such as wheezing, coughing, chest tightness and trouble breathing, especially at night and in the early morning. When asthma symptoms worsen, they are called an asthma attack, episode, flare, or exacerbation. During attacks, smooth muscle around the airways tighten up, narrowing the airways so less air flows to and from the lungs. Inflammation increases, and the airways become more swollen and constricted. Cells in the airways may produce more mucus than usual; this extra mucus also blocks the airways and makes it harder to breathe. Asthma attacks are not all the same among patients nor from episode to episode in the same patient. During a severe asthma attack, the airways can close so that not enough oxygen gets to vital organs. The result is status asthmaticus which, if not treated properly, may be a precursor to death.
Asthma cannot be cured, but it can be controlled so that patients experience few and infrequent symptoms and able to live active lives. As will be argued, remission of asthma can also occur with the right combination of factors. Taking care of asthma is an important part of a patient’s life. Controlling it requires patients work closely with their doctors to learn what to do, avoid stimuli that precipitate attacks, take medicines as directed, and apply an arsenal of self-management skills as needed.
Epidemiology of Asthma
A report from the Global Initiative for Asthma (GINA) summarized world data about the disorder (2). Asthma is one of the most common chronic illnesses in the world; an estimated 300 million people currently have the condition. The illness has become common in both children and adults in recent decades. The rate of asthma increases as communities become urbanized and adopt western lifestyles. With the projected increase in the proportion of the world's urban population from 45% to 59% by 2025, there be a marked increase in the number of people with asthma; it is estimated that there will be an additional 100 million persons with asthma by 2025. The GINA article estimated that asthma accounts for about 1 in every 250 deaths worldwide. Most of the deaths are preventable, and due to suboptimal medical care and delay in obtaining help during the final attack. This is particularly the case in poor and developing countries; the two countries with the highest rates of asthma mortality, for example, are Kazakhstan and Kyrgzstan.
The excellent summary from GINA offers sobering data regarding the worldwide impact of asthma. Equally bleak conclusions emerge in reviewing asthma data from developed countries. For example, asthma is a major public health problem in the U.S. as prevalence of the disorder has been on a steep rise since 1980 (3). Though many cases of asthma go undiagnosed, health officials estimate that at least 20 million people in the U.S. have asthma, including 6.3 million children. Each year, asthma accounts for more than 14 million outpatient clinic visits and nearly 2 million emergency room visits. Approximately 1 in 13 school-aged children has asthma, with the rate rising more rapidly in preschool aged children than in any other age group. Approximately 4.2 million children had an asthma attack in the last year, and the condition is responsible for almost 5 million physicians visits and more than 200,000 hospitalizations per year. Asthma is the third leading cause of hospitalization in children; it is a leading cause of school absenteeism from a chronic childhood disorder with an estimated 14.7 million school days lost per year because of the disease. In summary, is there little wonder that expenditures for health care and lost productivity due to asthma are estimated at $16 billion per year in the United States?
Education and Self-Management Interventions
Approaches to the self-management of asthma have traditionally been based on black box theory, a paradigm that ties input to output in a system by formally describing the rules that connect the two, but without stating what processes give realization to these rules (4). The theory dominates medical and behavioral research, including investigations of educational and self-management approaches to asthma. Randomized control trials (RCTs), the most commonly used experimental design, features patients being randomly assigned to either a treatment or a control group. With introduction of an intervention, pre-post comparisons can be made on endpoints established beforehand. In the typical intervention taken to the self-management of asthma, the emphasis is on presenting an educational procedure and assessing whatever changes occur in predetermined outcomes. Little or no consideration is given to the processes that mediate behavioral changes that occur from input to output, even though these are the critical elements both in self-management and in the long-term maintenance of these processes (5-7).
There is no lack of reviews that summarize the education and, supposedly, the self-management of asthma. A number are found in the Cochrane Library. There is a similarity to these reviews in that most rely upon the same data bases, particularly MEDLINE, PsycINFO, and EMBASE. They also utilize similar criteria in selecting studies included in the reviews. Several recent reviews can be briefly noted. One summary looked at educational interventions for childhood asthma (8). Information on 35 separate studies was presented. The approach taken in all studies is similar in that the topics of education, asthma management, and patient counseling were emphasized. The studies were conducted in a variety of settings, primarily by nurses and health educators. According to the accounts, little emphasis was placed on teaching self-management skills per se, although some information describing instruction in self-monitoring was noted in 3 of the 35 studies. Results indicated moderate improvements in airflow, self-efficacy, school attendance, days of restricted activity, and a reduction both in nights disturbed by asthma and emergency room (ER) visits. A review of self-management in adults presented data on 33 separate studies (9). The principle ingredients of these programs were again education, disease management, and counseling. However, self-monitoring, primarily of peak flow rates, was reported in 29 of the 33 studies. Results of the review showed reduced hospitalization, ER use, unscheduled visits to the doctor, days off work or school, nocturnal asthma, as well as improved quality of life. The Cochrane Library also contains other reviews, including information only patient education for adults that showed improved perception of asthma symptoms and reduced ER use (10); written action plans for asthma that suggest they are of little value in controlling asthma (11); written individualized plans for asthma in children and adults that reported similar findings (12); and options in education for adults in asthma (13). The latter review summarized 15 studies and found that self-adjustment of medications by patients was equivocal to medication adjustment by physicians in 6 studies, self-management using an action plan based on peak flow rates was equivalent to self-management using a symptoms-based action plan in 6 investigations, and 3 studies described different options such as providing optimal medical therapy, comparing high and low intensity education, and looking at results obtained between providing verbal instruction or written action plans (there was no difference between approaches).
Evidence of Efficacy of Programs
Limited evidence regarding the self-management of asthma was described in the reviews from the Cochrane Library. Reading them is like looking at a blueprint of an engine: it looks good, but it doesn’t tell you anything about how the engine actually works. You can pick up bits and pieces of information about what occurred in the reviewed studies, but they describe little about the processes of self-management. What is presented represents a narrow, one-dimensional approach to describing evidence-based literature that is meaningless to behavioral scientists truly interested in self-management. There is simply no way to determine what changes occurred between input and output in black box theory. Were changes due to patient performance or to enhanced medical treatment as both independent variables are usually introduced at the same time? As investigators attempt to optimize medical treatment concurrent with the offering of patient education, there is no way to delineate what generates positive change in the programs reviewed in the Cochrane Library.
A number of other reviews on the self-management of asthma parrot what is found in summaries in the Cochrane Collaboration (e.g., 14); as such, they add nothing to our knowledge of asthma self-management. Other reviews, particularly those that examine asthma and other chronic diseases, yield more information. Warsi and coworkers (15), for example, examined self-management education programs in chronic disease and concluded that patients with asthma experienced fewer attacks. In another review, Barlow and Ellard (16) examined the role of psycho-educational interventions in chronic illness including three studies on children with asthma. They concluded that there was evidence that interventions that incorporated cognitive-behavioral techniques influenced self-efficacy, self-management, family functioning, psychosocial well-being, reduced isolation, social competence, knowledge, and hope. In children with asthma, the interventions improved lung function, and reduced days absent from school and visits to emergency departments. Finally, Newman and colleagues (17) examined self-management interventions for chronic illness, including asthma. Their review described details of asthma self-management, and rightly concluded that the programs offer intensive management of symptoms rather than true self-management.
In summary, asthma education and self-management programs have generated: (a) improvements in pulmonary functioning; (b) reduced hospitalization, ER use, and doctor visits; (c) reduced nocturnal asthma; (d) less daily restriction of activity; (e) improved quality of life; and (f) increased self-efficacy. These are significant results, especially to those who experience asthma and their families. What has not been reported in the summarized evidence-based reviews on asthma self-management, however, was: (a) a theoretical basis for the research; (b) elucidation of self-management skills performed by patients; (c) empirical evidence of behavioral change; and (d) maintenance of self-management competencies. These findings cannot be detected in black box theory; all that can be determined is that some sort of education, coupled with improved medical care, occurred.
Content and Approach
A more optimistic view of asthma self-management can be obtained by reviewing what is known regarding the issues of theoretical underpinnings, elucidation of self-management processes, empirical evidence of behavioral change, and maintenance of skills.
Theoretical Basis
Newman et al. (17) decried the lack of a theoretical basis for self-management of chronic illness. Their point is valid for most self-management research, although a few successful asthma self-management programs are theoretically well grounded. The theoretical basis is three pronged: operant behavior, social cognitive theory, and elucidation of self-management processes.
Operant Behavior
Operant behavior is that class of behavior controlled, at least in part, by its consequences. (e.g., 18). Elements of operant behavior are widely incorporated into the self-management of asthma, in part through of the establishment of discriminative stimuli (7). These are stimuli thought to be discriminative when, after being reliably present when a response is reinforced, can systematically alter the probability of the rate of that response occurring in the future (19). Patients in an asthma self-management program, for example, are often given a peak flow meter and an asthma action plan. They are told to gather and record peak flow rates, and to match the values they obtain against their highest peak flow value. The two values, personal best flow rate and a value obtained at a given moment, can become discriminative stimuli that set the occasion for subsequent behaviors performed by patients. If flow values are high compared to personal best, the patient will likely do nothing; high values, however, can reinforce the patient to perform peak flow maneuvers in the future. If rates are low compared to personal best, the values are likely to become discriminative stimuli that prompt the patient to perform behaviors to prevent or abort an attack. Asthma action plans identify potential stimuli that can through operant learning become discriminative stimuli that prompt patients to perform, often in a linear manner, whatever processes are needed to control both asthma and exacerbations of the condition. Self-management programs that have intentionally incorporated stimulus discrimination as a major ingredient in their protocol have proven highly effective in improving outcome measures in asthma (20).
Kanfer and colleagues conducted self-regulation research within an operant framework (21, 22). They perceived self-control as a series of processes in which an individual attempted to alter the probability of a response in the absence of immediate external awards. Processes included: (a) self-monitoring, which involves individuals diligently attending to some aspect of their behavior; (b) self-evaluation, where individuals compare information obtained though self-monitoring to standards established for a given behavior; and (c) self-reinforcement. During this stage, individuals react cognitively and emotionally to the results of their self-evaluation. Kanfer and his associates extended the operant model by accentuating the goal of changing regulatory processes, not just behavioral or medical outcomes.
Social Cognitive Theory
With social cognitive theory, Bandura (23-25) expanded behaviorism by adding a cognitive emphasis. He explained human functioning in terms of a triadic reciprocal causation where environmental, cognitive and other personal factors, and behavior interact and influence one another in a bidirectional manner. An individual's behavior is uniquely determined by the interaction of these factors; the three-way relationship is referred to as reciprocal determinism. Social cognitive theory upholds the behaviorist notion that response consequences mediate behavior, but contends that behavior is largely regulated antecedently through cognitive processes. Response consequences of a behavior, for example, lead to expectations of behavioral outcomes. Bandura viewed human behavior as largely self-regulated. Key to successful self-regulation was perceived self-efficacy. The construct refers to one’s beliefs about what he or she is capable of doing a particular behavior in a given situation, and arises from a number of sources including personal accomplishments and failures, seeing others succeed or fail, and verbal persuasion. Events over which personal influence is exercised vary widely across time, settings, and tasks. For example, the perceived self-efficacy required for patients to follow treatment instructions for asthma, such as calling their health care provider at the onset of an attack, is much different from asking them to take responsibility for executing the day-to-day processes required to control the condition. With respect to the latter, self-efficacy in the self-management of asthma only occurs with sustained personal performance across a number and variety of situations. The result is a dynamic model of self-management characterized by continuous change, activity, and progress. The fluidity of behavior places greater emphasis upon delineating different processes involved in self-management, as well as how they continually interact with one another.
Processes model
The process model evolved during four decades of research on self-management as performed by patients with a chronic illness, particularly those with asthma (e.g., 7,26,27). The impetus for the approach came from two sources: First, the process paradigm represents an amalgamation of the essentials of operant behavior and social cognitive theory. It readily borrowed components with proven empirical validity from these two paradigms. Elements include the use of environmental stimuli, particularly the establishment of discriminative stimuli, as featured in the operant and extended operant paradigms. Process behaviors, such as self-monitoring and self-evaluation, came from both operant behavior and social cognitive theory. Self-efficacy, a cornerstone of social cognitive theory, is critical to the process approach. Second, the process approach is built upon the observations and self-reports of patients who performed self-management skills. It is less theoretical than most behavioral change models and based more on empirical data. Observable and measurable aspects of individual’s environment, their behavior, and the consequences of their actions are the critical matter examined in the process paradigm. The model best fits data gathered by investigating self-management with a number of chronic conditions ranging from asthma to migraine and from cystic fibrosis to renal transplantation.
Processes identified as crucial to the self-management of asthma include goal selection, self-monitoring, data interpretation, decision making, action, and self-efficacy. To attain the highest level of performance in self-management requires a multidimensional or reciprocal interaction among the processes. The relationship prompts the performance of whatever actions are necessary to manage asthma. In self-management, the interactions provide feedback to patients as to the effectiveness of their actions, as well as permitting them to plan and perform future actions. The interactions are apt to be overly conscious at the beginning of a patient’s performance of self-management skills; here, the patient is at the same stage as one who is learning to drive a car. With successful practice of skills, however, the performance becomes that of an experienced driver. This change is identical to that of patients who learn to adapt self-management tactics as a function of the severity both of asthma and individual asthma attacks.
The processes are not entirely equal in managing asthma at any given moment. Depending upon the situation and timeline of treatment any one of the processes could be dominant. This illustrates the point that interactions among the processes change on a momentary basis as dictated by the patient in reacting to asthma. The multidirectional interactions among the processes can be highly complex as they are constantly changing. This makes it difficult to assess or causally explain what is occurring at any given time. Nevertheless, the model does an excellent job of accounting for the experience of patients who perform different processes of self-management over time (e.g., 7).
Self-Management Skills
Initial Program
For almost 40 years, my colleagues and I have had the good fortune both to observe patients and to analyze their reports with respect to the performance of asthma self-management skills. All of the components were initially analyzed and evaluated over a 13 year period with approximately 1,800 patients at the National Asthma Center (NAC), a residential treatment facility for childhood asthma in Denver, Colorado. What occurred during the patients’ stay can be divided into two stages: First, the children acquired a thorough knowledge of asthma and its management. As noted by Parcel and colleagues (28), patient education is essential in self-management training. No formal education programs were conducted as the children were immersed in a learning environment that included physicians, nurses, psychologists, child care workers, and peers that constantly accentuated the acquisition of knowledge regarding asthma. Second, children were taught self-management skills to control their asthma (29,30). Some of the skills they used--including children as young as 5 years of age to be solely in charge of their medications--remain cutting edge with respect to self-management (30). This study can also be used to illustrate the six processes of self-management:
(1) Goal setting: Initially, all instruction on medication use was directed in one direction from physicians and other health personnel to children. However, when it appeared that a child had acquired expertise about asthma and medical treatment, particularly the taking of asthma medications, the youngster and his or her physician entered into negotiation. This give-and-take culminated in a jointly written contract, signed by both parties, as to what the child had to do in terms of self-management of medications in order to be discharged from the center and return home.
(2) Self-monitoring: Once a contract was signed, each child received a week’s supply of medications. Initially, the child was monitored daily by the nursing staff to assure both that the youngster was taking medications properly and to provide feedback to the child. Tracking by others faded out, however, as the child demonstrated he or she was competent at self-monitoring. At the end of training, the children monitored all aspects of medication taking with only occasional random tests to make certain their performance remained appropriate.
(3) Data interpretation: The children interpreted the information they collected on themselves; based upon their evaluation, they made decisions regarding their future performance.
(4) Decision making: The children learned how to judge the information they gathered and to make decisions based upon their personal data base. If a child deemed a change was required, such as adjusting a medication dose, he or she would discuss the matter with physicians or nurses.
(5) Action: All the actions required to adhere to their medication schedule were performed by children. These included the taking of the proper dose of medication on schedule to using inhalers effectively.
(6) Self-efficacy: The construct of self-efficacy has yet to be introduced when we started our research in self-management so we relied upon an instrument that measured self-concept in children (31). It provided a general overview of a child’s self-confidence, but was not specific to the self-management skills performed to manage asthma; self-efficacy was later demonstrated in studies with adults using a valid and reliable instrument (20). The children’s performance was tracked both while they were at the NAC and after they returned home; the latter assessment involved collecting monthly diary data from families. These provided information as to medical aspects of the youngster’s asthma and how they managed it behaviorally.
Later Programs
Later, separate stand alone programs for self-management were developed. Subjects included 399 children, parents, and caregivers involved in a self-management program for children (32), 90 patients in an adult self-management program (20), and approximately 150 other patients, both children and adults, who participated in assorted self-management programs for asthma (e.g., 33). The programs featured use of the basic process model. However, four decisions made at the outset proved crucial to the success of self-management: First, we employed RCTs with waiting-list controls whereby subjects initially assigned to a control group later received training in self-management. The approach permitted us to compare an experimental group against a control group for education before providing education to participants in the control group. The real strength of a waiting-list design, however, is that we were able to use the participants as their own control and to track their performance over time. Second, training was conducted over a 7 or 8 week period. This allowed us to evaluate both the acquisition and performance of self-management skills. Third, medical control was established over each participant’s asthma before teaching him or her self-management skills. We were able to introduce only one independent variable, self-management training, instead of introducing two independent variables concurrently: training and enhanced medical management. This tactic meant that the behavioral changes we obtained were likely due to self-management, not to improved medical treatment. Finally, data were collected on participants before, during, and following formal participation in the programs. By assessing patient performance over time, we had the opportunity to observe patients and to analyze the information they gathered during all stages of their participation. Of particular interest to us was the long-term maintenance of asthma self-management skills. Critique of Process Model
Detailed results of self-management programs based on the process model are found elsewhere (20,32). In addition, detailed information describing what was found during each process has been described (5-7). Each process alone may sometimes change specific behaviors, but it is the reciprocal interaction among processes that generates the behavioral change required to self-manage asthma. Of the processes, self-efficacy likely sparks the reciprocal interaction of the processes and generates effective performance over time. If a patient acquires self-efficacy through successful performance, he or she has been reinforced by self-reinforcement, by the avoidance or aborting of attacks, and by the control established over his or her asthma. Two other results are linked to increased self-efficacy. First, heightened self-efficacy increases the generalizability of self-management skills across time and different settings. This was repeatedly found in patient reports. Second, the role of self-efficacy is key to the long-term maintenance of asthma self-management skills for five years in children (20) and for seven years in adults (35). Much to our delight (and surprise), we found that the majority of both children and adults who participated in our programs had experienced remission of their asthma. Others have also reported on the role of self-efficacy in asthma. Lorig and her colleagues, for example, integrated self-efficacy into the Chronic Disease Self-Management Program, an approach for several chronic illnesses including asthma. They found that the program improved health status while reducing health care costs at one (35) and two (36) years following involvement with their program. Additional evidence for the significance of self-efficacy in asthma self-management was described by Lucas and her colleagues (37). In this study, patients were followed up at one and two years after participation in the study. Self-efficacy scores were higher at one year than at the end of participation; furthermore, there was indirect evidence that self-efficacy was maintained at two years in that improvement in asthma variables shown at 1 year post-intervention were maintained at 2 years.
Conclusions
Despite the meaningless findings of the Cochrane Library, self-management can play a prominent role in optimizing control over asthma. The skills performed by patients offer chronic control over chronic disorders. In order to be effective, however, the focus in asthma must shift in two ways: First, as argued throughout the chapter, there is the need to forego black box theory and concentrate on what patients actually do in self-management; this eliminates speculation regarding their performance. Second, long-term data on patients performance and their asthma must be gathered. A recurring issue found in reviewing self-management programs across the spectrum of chronic illness is that once formal participation ends, self-management performance starts to fade. This suggests that self-management of chronic illness does not, in most cases, occur; rather, it is the reinforcement provided by being in a context with health care personnel who provide disease management, education, and patient counseling that generates limited behavioral change. When that context goes, the extinction of self-management skills begins.
In initiating research on self-management, our aim was to develop and test self-management strategies to permit patients and clinicians to control asthma. Thanks to long-term follow-up data, however, we have moved beyond this goal: I believe that the majority of patients will experience remission of asthma when they learn, execute, and continue to perform self-management processes as long as needed. The combination of unknown physiological changes; skilled medical care, along with potent medications for asthma; and the chronic performance of self-management skills is too potent a formula not to generate remission of asthma in most patients. For this reason, the goal that future investigators should pursue in asthma self-management is to focus on assessing behavioral and cognitive processes that generate enduring change over time.
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Thomas L. Creer, Ph.D.
Professor Emeritus of Psychology
Ohio University
Athens, Ohio
January 28, 2008