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No Symptoms, No Asthma^*

The Acute Episodic Disease Belief Is Associated With Poor Self-Management Among Inner-City Adults With Persistent Asthma

^* From the Division of General Internal Medicine (Dr. Halm), Department of Medicine, Mount Sinai School of Medicine, New York, NY; and Institute for Health, Health Care Policy and Aging Research (Drs. Mora and Leventhal), Rutgers University, New Brunswick, NJ.

Correspondence to: Ethan A. Halm, MD, MPH, Division of General Internal Medicine, Mount Sinai School of Medicine, Box 1087, One Gustave L. Levy Place, New York, NY 10029; e-mail: ethan.halm{at}mountsinai.org

Abstract

Objective: Asthma morbidity and mortality is highest among inner-city populations. Suboptimal beliefs about the chronicity of asthma may perpetuate poor asthma control among inner-city asthmatics. This study sought to characterize beliefs about the chronicity of disease and its correlates in a cohort of inner-city adults with persistent asthma.

Design: Prospective, longitudinal, observational cohort study.

Patients: One hundred ninety-eight adults hospitalized with asthma over a 12-month period at an inner-city teaching hospital.

Measurements: Sociodemographics, clinical history, disease beliefs, and self-management behaviors were collected by interview. Information on self-reported use of inhaled corticosteroids (ICS), peak flowmeters, and regular asthma visits was collected during hospitalization, and 1 month and 6 months after discharge.

Results: This cohort was predominantly low income and nonwhite, with high rates of prior intubation, oral steroid use, and emergency department visits and hospitalizations. Overall, 53% of patients believed they only had asthma when they were having symptoms, what we call the no symptoms, no asthma belief. Men patients, those 65 years old, and those with no usual place of care had greater odds of having the no symptoms, no asthma belief, and those receiving oral steroids all or most of the time or with symptoms most days had half the odds of having this belief (p < 0.05 for all). The no symptoms, no asthma belief was negatively associated with beliefs about always having asthma, having lung inflammation, or the importance of using ICS, and was positively associated with expecting to be cured. The acute disease belief was associated with one-third lower odds of adherence to ICS when asymptomatic at all three time periods (p < 0.02 for all).

Conclusion: The single question, "Do you think you have asthma all of the time, or only when you are having symptoms?" can efficiently identify patients who do not think about or manage their asthma as a chronic disease.

Key Words: adherence • asthma • behaviors • beliefs • knowledge

Asthma is a common and costly public health problem affecting 17 million Americans at annual cost of $11 billion.¹² Rates of asthma morbidity, mortality, and acute resource utilization are highest among minority, inner-city populations.¹³⁴ The burden from asthma in East Harlem, NY, is particularly high, with rates of hospitalization and death that are several times the national average, making it one of the hardest-hit communities in the United States.⁵⁶⁷ From a public health perspective, the high morbidity and mortality from asthma is especially frustrating because there is a national consensus that much of it could be prevented by greater and more consistent use of proven effective therapy (particularly daily use of inhaled corticosteroids [ICS]⁸) and better self management.⁹¹⁰

The National Asthma Education and Prevention Program (NAEPP) guidelines highlight the fact that patients play an instrumental role in managing their own condition.¹⁰ Nonadherence to daily controller ICS therapy is probably the most important barrier to achieving optimal asthma control.^1011121314 Major deficits in other self-management behaviors such as peak flowmeter use, inhaler technique, titration of medications, trigger avoidance, and use of action plans have also been documented.^{15161718192021} Underuse of ICS and other NAEPP recommended self-management behaviors appears to be more common in nonwhite patients.²²²³²⁴

Patients’ understanding of their illness and its treatment may be an important, potentially modifiable mediator of adherence with chronic medications and self-management behaviors. As such, suboptimal beliefs about asthma may interfere with appropriate therapy and self care and perpetuate poor asthma outcomes, especially in inner-city populations.

We used the Leventhal Common Sense Self-Regulation Model to examine patients’ underlying beliefs about asthma and its treatment.²⁵²⁶²⁷ This model has been used to study health beliefs and behaviors in other diseases that have both symptomatic and asymptomatic components, including hypertension, diabetes, and heart failure.^26272829 According to the theory, the most common mental model of illness is based on experience with acute illnesses such as colds, flu, and urinary tract infections. These ubiquitous health experiences encourage patients to think of illnesses as acute episodes rather than chronic conditions. Applying this to asthma, patients with an acute, episodic model would conceptualize their illness as the intermittent episodes of flares and attacks, but consider the time between these as "disease free." We have termed this the no symptoms, no asthma disease belief. Our hypothesis was that patients with this acute episodic disease belief would be less likely to believe they have asthma all of the time even when they are asymptomatic, and that they will always have asthma their whole life; and that they would be less likely to use long-term antiinflammatory therapy or engage in other self-management behaviors. The goals of this study are as follows: (1) to characterize patients’ beliefs about whether asthma is a chronic or acute episodic illness; (2) to identify the characteristics of patients with the acute, episodic no symptoms, no asthma disease belief; and (3) to assess associations between the no symptoms, no asthma belief and other chronicity beliefs, medication adherence, and other self-management behaviors.

Materials and Methods

Study Participants
The cohort study has been described previously.²⁰ We prospectively identified an inception cohort of all adults hospitalized for asthma at a 1,100-bed university teaching hospital in New York City during a consecutive 12-month period (September 2001 through September 2002). The hospital is the largest provider of care for the East Harlem community. Computerized hospital admission logs were used to identify all adults with a primary or secondary admission diagnosis of asthma (International Classification of Diseases, Ninth Revision codes 493, 493.X, and 493.XX). The protocol was approved by the Institutional Review Board.

Inclusion and Exclusion Criteria
Eligibility criteria were as follows: (1) age 18 years; (2) English or Spanish speaking; (3) competent to give informed consent; (4) physician-diagnosed asthma; and (5) asthma as the primary reason for hospital admission (confirmed by chart review). Exclusions were as follows: (1) primary COPD, other lung disease, or home oxygen therapy; (2) patients admitted and discharged on the same weekend when study personnel were not available; and (3) prior participation in this study.

Data Collection and Measurements
Trained research staff conducted an interviewer-administered survey in English or Spanish during the index admission and 1 month and 6 months after discharge. Domains of interest included sociodemographics, asthma history, access to care, and beliefs about asthma. The primary question assessing whether patients thought of asthma as a chronic disease or an acute, episodic illness was, "Do you think you have asthma all of the time or only when you are having symptoms?" (responses: I have it all of the time, most of the time, some of the time, or only when I am having symptoms). Patients who said they only had asthma when they were having symptoms were considered to have the no symptoms, no asthma acute, episodic disease belief. Secondary disease chronicity questions included the following: (1) "Do you think you will always have asthma?" (definitely, probably, possibly, or no); (2) "Do you think you have asthma because your lungs are always a bit inflamed or irritated?" (definitely, probably, possibly, or no); and (3) "Do you expect the doctor to cure you of your asthma?" (definitely, probably, possibly, no). Behaviors of interest included self-reported adherence with long-term ICS as well as other self-management behaviors (eg, use of spacers, peak flow monitoring, and regular physician visits in the absence of symptoms). These self-management behaviors are some of the key components of self management outlined by NAEPP guidelines.¹⁰ The key self-reported ICS adherence item was, "How often you take your [name of ICS medicine] on days when you are NOT having asthma symptoms?" (all of the time, most of the time, some of the time, occasionally, or never). Survey items were drawn from previous instruments when available, forward- and back-translated to confirm consistent meaning, and piloted prior to finalization.

Statistical Analysis
Means ± SDs and frequencies are presented for patient characteristics. The dependent variable of interest was those patients who said they only had asthma when they were having asthma symptoms, the no symptoms, no asthma belief. We used ², Wilcoxon, and t tests to examine univariate associations between the no symptoms, no asthma belief and patient characteristics (sociodemographics, asthma history, comorbidities, and access to care), as well as associations between the no symptoms, no asthma beliefs and other chronicity beliefs, ICS adherence, and other self-management behaviors. Tests of association between the no symptoms, no asthma belief and ICS adherence at baseline, 1 month, and 6 months were restricted to those patients who had been prescribed ICS at those different time periods. Similarly, associations with peak flow meter use were done among those who had been given peak flowmeters. Secondary analyses that used spearman tests to measure correlations between belief items and other independent variables (both measured on Likert scales) produced similar findings as those presented here.

We used multiple logistic regression to examine associations between the no symptoms, no asthma belief and patient characteristics. Because many patient variables were highly correlated, we first identified independent predictors within each domain (sociodemographics, asthma history, comorbidities, and access to care). The best candidate factors significant at the p < 0.2 level for each domain were carried forward into the final multiple logistic regression model of the no symptoms, no asthma mental model.

We used stepwise, multiple logistic regression models to examine associations between the no symptoms, no asthma belief and the odds of using ICS all or most days when asymptomatic after adjusting for other covariates known to influence ICS use. Candidate covariates included the following: age, sex, education, race, insurance, income, prior intubation, prior oral steroid use, frequency of oral steroid use, symptom burden, prior emergency department (ED) or hospital utilization, among others. Predictors of ICS adherence significant at the p < 0.2 level were carried forward into the final model. The asthma severity covariates were highly correlated. Two severity covariates—prior intubation and frequency of oral steroid use—were the most robust predictors of ICS adherence, and were included in the final logistic regression results presented along with age and sex. Alternate logistic regression models that adjusted for severity based on different combinations of prior hospitalizations, age of onset, or symptom burden produced similar findings (although less robust logistical models). All analyses used two-tailed significance levels of p < 0.05 using statistical software (SAS Version 9.1; SAS Institute; Cary, NC).

Results

Patient Participation and Response Rates
During the study period, there were 384 hospitalizations with a primary or secondary diagnosis of asthma; 335 were confirmed asthma admissions among 250 unique patients. Of these, 218 patients met eligibility criteria, and 204 patients (94%) consented to participate. Reasons for exclusion were as follows: readmissions among study participants (n = 85), active psychiatric problems (n = 9), and admitted/discharged on the same weekend (n = 23). Of the 204 who consented, 198 patients (97%) completed the baseline interview, 177 patients (87%) completed the 1-month survey, and 170 patients (84%) completed the 6-month survey.

Patient Characteristics
Characteristics of the cohort are shown in Table 1 . The cohort was predominantly low-income, Hispanic, and African-American women with high rates of prior intubation, oral steroid use, and asthma-related ED visits and hospitalizations, consistent with the epidemiology of inner-city asthma. Eighty percent of patients had a usual source of asthma care, and 89% had been going there for > 1 year.

Characteristics of Patients With the No Symptoms, No Asthma Disease Belief
Univariate predictors of patients possessing the no symptoms, no asthma disease belief are displayed in Table 2 . Patients who were male, 65 years old, spoke only Spanish, were current smokers, and had no usual place of asthma care were more likely to have the acute, episodic model of disease. Patients with more severe asthma (indicated by frequency of oral steroid use, ever-used oral steroids, or having symptoms on most days) were less likely to subscribe to this view as were patients with gastroesophageal reflux disease (GERD) or allergic rhinitis. There were no associations between the no symptoms, no asthma belief and race, ethnicity, insurance, prior asthma ED or hospital utilization, other comorbidities (diabetes, congestive heart failure, depression or anxiety disorders), alcohol or drug use, or the specialty of the asthma provider. In multiple logistic regression analyses, men, those 65 years old, and without a usual place of care had threefold to fourfold greater odds of having the no symptoms, no asthma belief, and those who used oral steroids most days or had symptoms most days had half the odds of having this belief (Table 3 ).

Associations Among Disease Beliefs and Between Beliefs and Behaviors
Associations between the main self-regulation disease beliefs are displayed in Table 4 . Patients with the no symptoms, no asthma mental model were much more likely to say they will not always have asthma (odds ratio [OR], 4.5; 95% confidence interval [CI], 1.9 to 10.4) and expect to be cured (OR, 3.9; CI, 1.4 to 11.1), and much less likely to say their lungs were always inflamed (OR, 0.36; CI, 0.2 to 0.7). As the theory predicted, the no symptoms, no asthma belief was associated with the medication belief regarding the importance of using ICS in the absence of symptoms, but not the importance of using ICS when symptomatic.

Discussion

In this study of a cohort of high-risk, inner-city adults hospitalized for asthma, underlying beliefs about the chronicity of disease, on which all guideline recommended care is based, varied widely. The most striking finding was that over half of the patients had the no symptoms, no asthma disease belief, suggesting that they think about their disease as an acute episodic illness. Our confidence that we have identified a dominant, deeply held, acute episodic disease belief is strengthened by several of the associations we uncovered. First, the chronicity beliefs all tracked together as the self-regulation theory predicted. Individuals who had the no symptoms, no asthma belief were also more likely to say they will not always have asthma and expect to be cured, and less likely to think their lungs were always inflamed. Second, this disease belief was related, in a discriminating way, to beliefs about the importance of using ICS when symptomatic, but not when asymptomatic (when the disease would be considered "gone"). Third, the no symptoms, no asthma belief was strongly associated with lower rates of self-reported adherence to ICS at three separate time periods and after controlling for other factors known to influence medication compliance. Fourth, those with this acute belief were also less likely to participate in other key self-management tasks such as having routine doctor visits for asthma or monitoring their peak flow.

It is worth noting that conceptualizing asthma as an acute, episodic illness may have an internal logic of its own perhaps driven by some unique characteristics of the disease itself. The dramatic, fast onset of severe symptoms with little apparent warning may encourage the representation of asthma as a series of unexpected, acute episodes separated by nonasthmatic "disease-free" periods. The distressing symptoms of difficulty breathing and chest tightness that signal severe episodes, and likelihood that physicians and family members label these as "asthma attacks," can reinforce this conceptualization. The focus on "attacks" and relief experienced when a severe episode is terminated encourages the perceptual separation of severe symptoms from the low level symptoms and functional impairments that often persists between attacks due to persistent airway inflammation. The knowledge of and experience with environmental or allergic triggers, which can precipitate acute respiratory symptoms, can further reinforce the acute, episodic model. The puzzling, but common phenomenon that children often "outgrow" the disease may additionally undercut the notion that asthma is a chronic disease. All of these may contribute to why such health beliefs about asthma are common and may be particularly difficult to disconfirm.

Our multivariate analyses examining which patients are more likely to have the no symptoms, no asthma belief produced some expected and unexpected findings. It makes sense that patients receiving oral steroids most of the time and/or symptoms on most days would be less likely think they only had asthma intermittently. Those lacking a usual place of asthma care may be more likely to have suboptimal beliefs because they may have never had the chance to learn about and believe the chronic, inflammatory nature of asthma, something that likely takes place over time and after several discussions with a clinician or health educator. Since we cannot infer causality, an alternate explanation is that those who do not think of their asthma as chronic would see less need to establish an ongoing relationship with an outpatient provider.

That male and elderly patients were more likely to endorse these suboptimal beliefs is somewhat more puzzling. While gender differences in care seeking are well documented, less has been reported about such sex disparities in underlying health cognition, especially regarding non-gender-related issues. We have no easy explanation for why older patients were less likely to hold the chronic disease belief, since the elderly are more likely to have several other chronic diseases. This was not explained by a later age of disease onset or presence of other comorbid conditions. The fact that older adults were more likely to hold the acute model is consistent with the tendency of elderly individuals to attribute symptoms to the "aging process" not disease.³⁰³¹ There is also evidence that the perception of airflow obstruction is blunted in the elderly.³² Older patients may have also acquired their understanding of asthma in previous decades when the medical concept of asthma was very different. Given the aging of the general population, the problem of asthma in the elderly will require increasing attention and may hold special challenges.

Our findings are even more striking in the context that the vast majority of the patients we interviewed had asthma for many years, and had high rates of intubation, oral steroid use, and many prior ED visits and hospitalizations. These were not patients with newly diagnosed disease, with mild intermittent disease, or with infrequent contact with the health-care system. This suggests that many of those at high risk with the highest utilization patterns, despite insurance and frequent contact with the health-care system, have underlying beliefs about asthma that are major obstacles to adherence with daily antiinflammatory therapy and other self-management behaviors. Whether this is due, in part, to lack of effective chronic disease education on the part of providers or resistant patient health beliefs is less clear and merits further investigation. The self-regulation conceptual model that this work is based on predicted that the acute, episodic mental model of asthma would be common, dominant, and difficult to disconfirm. Others have noted something similar among asthmatics calling it "denial."³³ Whatever the causes, the large proportion of asthmatics viewing asymptomatic periods as disease free may also explain the high rates of underuse of ICS, as well as high rates of overuse of symptom-based acute relief medications (short-acting ß-agonists) that have been widely reported. Breaking this self-perpetuating cycle of suboptimal beliefs, poor adherence, and adverse outcomes will not be easy.

Several limitations of this study merit comment. This was a modest-sized cohort who were enrolled based on hospitalizations at a single, urban institution. However, patients received their ambulatory care from a variety of hospital, community health center, and office-based outpatient sites. The rates of adherence to ICS and other self-management behaviors were similar to, or higher than, those reported in large multicenter studies,^{14222324343536} so the deficits we found are that much more striking. Because patients had to be hospitalized to be eligible, our data overrepresents those with the worst disease and poorest self management. We purposely focused on inner-city patients with moderate and severe asthma because they are at highest risk for morbidity, mortality, and high resource use, so the importance of appropriate self-management beliefs and behaviors in these individuals is unequivocal. Future work will be needed to confirm the generalizability of these findings in other settings and patient populations. The self-regulation belief questions and answers that we used were novel and should be further validated. However, they were theoretically based, well understood, and appeared to have good face and construct validity. All of our medication adherence and behavior measures were self reported and should be interpreted accordingly. Such patient reports are used frequently in this field.^{23243435363738} We recognize that although correlations between self-reported rates and objective measures of medication compliance can be good,³⁹ they are likely overestimates.⁴⁰⁴¹ However, this is more commonly a concern when a very high rate of adherence is reported. In this cohort, a large proportion of patients readily reported low adherence with ICS when asymptomatic, our primary medication adherence outcome.

For clinicians, the single question of, "Do you think you have asthma all of the time, or only when you are having symptoms?" can efficiently identify patients who are not predisposed to think about or manage their asthma as a chronic disease—the medical model on which all best practices and National Institutes of Health treatment guidelines are based. Patients who screen "positive" for this common no symptoms, no asthma belief, because of their high risk for nonadherence, should be given the highest priority for referral to formal asthma education or chronic disease management programs, resources that are often limited. From a very practical standpoint, clinicians can also use this information to help deliver a simple, directed counseling message such as, "It is important that you understand that you have your asthma all of the time, even when you are feeling well. That is why it’s so important to use your [name of ICS] everyday, twice a day, whether you are feeling good or bad, to help cool off the inflammation in your lungs and keep your asthma from acting up."

For those researchers, educators, and administrators who design and run asthma education and disease management programs, more focused time and energy probably needs to be spent on uncovering and then overcoming mental representations of disease that may prove to be fundamental impediments to improving chronic disease outcomes. Given the diversity of underlying disease beliefs, future asthma interventions that are better tailored to an individual’s beliefs and behaviors may be particularly promising. Finally, it may also be fruitful to use the approach outlined here to examine the prevalence and impact of acute, episodic mental models of other chronic diseases that have asymptomatic phases such as hypertension, diabetes, and congestive heart failure.

Acknowledgements

The authors would also like to thank Allison Cooperman, MPH, Jason Wang, PhD, Jessica Salazar, Lisa Fitzgerald, BA, Toni Sturm, MD, and Juan Wisnivesky, MD, MPH, for their contribution to the project, as well as the patients and their physicians for their goodwill and cooperation.

Footnotes

Abbreviations: ED = emergency department; CI = confidence interval; GERD = gastroesophageal reflux disease; ICS = inhaled corticosteroids; NAEPP = National Asthma Education and Prevention Program; OR = odds ratio

This study was funded by the Agency for Healthcare Research and Quality (RO1 HS09973) and the United Hospital Fund (010608B).

Dr. Halm was also supported by the Robert Wood Johnson Foundation Generalist Physician Faculty Scholars Program.

An earlier version of these results were presented at the American Thoracic Society meeting on May 18, 2003.

Received for publication July 2, 2005. Accepted for publication August 31, 2005.

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