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Descriptors of dyspnea by patients with chronic obstructive pulmonary disease versus congestive heart failure
Descriptors of dyspnea by patients with chronic obstructive pulmonary disease versus congestive heart failure Adelaide de Souza Caroci, RN, MSN,a and Suzanne C. Lareau, RN, MS,b Loma Linda, California, and Albuquerque, New Mexico
OBJECTIVES: The purpose of this study was to determine whether differences existed between reports of dyspnea in stable chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF) subjects. METHODS: Sixty stable COPD (n ⫽ 30) and CHF (n ⫽ 30) male, outpatient subjects were studied. Subjects were asked to both endorse (from a pre-designed list of descriptors) and volunteer terms that best described their breathing discomfort. Subjects also reported the frequency and the intensity of breathlessness (0-10 scale) using the Pulmonary Functional Status and Dyspnea Questionnaire. RESULTS: From the endorsed list of descriptors, my breath does not go out all the way, was significantly different (COPD ⫽ 11, CHF ⫽ 4, P ⬍ .05) between groups. The most common terms volunteered by COPD subjects were scary (n ⫽ 5, P ⬍ .02), hard to breathe (n ⫽ 5), shortness of breath (n ⫽ 4), and cannot get enough air (n ⫽ 4), whereas CHF subjects volunteered the terms, shortness of breath (n ⫽ 9), gasping (n ⫽ 6), and cannot get enough air (n ⫽ 4). There was no difference in the frequency with which both groups experienced dyspnea or times per month they reported severe to very severe dyspnea. Subjects with COPD experienced a higher intensity of breathlessness on different occasions P ⬍ .05. CONCLUSIONS: Stable COPD and CHF patients use and recognize a variety of terms that describe their breathing distress. There was, however, only 1 unique term among the endorsed and volunteered terms, and that was among the COPD subjects. COPD and CHF subjects shared many common terms and also experienced dyspnea with similar frequency. The uniqueness of terms among the COPD group was less clear. The study highlights the variability of the dyspnea experience among COPD and CHF patients and the potential difficulty identifying unique dyspnea terms in these subjects. (Heart Lung® 2004;33:102-10.)
INTRODUCTION Dyspnea, or breathlessness, is the most common symptom reported by patients with chronic obstructive pulmonary disease (COPD)1 and congestive heart failure (CHF)1-3 seeking medical help. Patients with COPD and CHF are reported to use unique terms when describing breathlessness.4-6 It has been proposed that these terms are sufficiently From the aSchool of Nursing, Loma Linda University, Loma Linda, California, bPulmonary Section, New Mexico Health Care System Albuquerque, New Mexico. Presented in part at the American Thoracic Society International Conference, Atlanta, Ga, May 19-22, 2002. Reprint requests: Adelaide Caroci, RN, MSN, Rua: Candal, 1 Apt. 42, Jd. Amalia- Sa˜o Paulo, SP 05890-030, Brazil. 0147-9563/$ – see front matter Copyright © 2004 by Elsevier Inc. doi:10.1016/j.hrtlng.2003.11.004
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unique to be used to diagnose various abnormalities and patient response to treatment.6 These same studies however, have been inconsistent in identifying the terms patients use within various diagnostic categories. Before adopting the notion of unique terms among diagnostic groups, greater clarity about the terms patients use to communicate their breathlessness is required. We therefore studied the differences in both the reported and the volunteered terms patients use to describe dyspnea in 2 diagnostic groups: COPD and CHF patients. We anticipated that the selection of terms from the standardized list4 would be similar to those reported in the literature. Furthermore, we anticipated that the terms volunteered (without benefit of prompting from a list) by patients would be similar to this standardized list.
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Table I Clusters and descriptors of breathlessness Clusters
Descriptors
Rapid
I feel that my breathing is rapid. Exhalation My breath does not go out all the way. Shallow My breath does not go in all the way. My breathing is shallow. Work My breathing requires effort. My breathing requires more work. Suffocating I feel that I am smothering. I feel I am suffocating. Hunger I feel a hunger for more air. I feel out of breath. I cannot get enough air. Tight My chest feels tight. My chest is constricted. Heavy My breathing is heavy. I feel that I am breathing more. Derived from Simon et al, 1990.4
Dyspnea, breathlessness, and shortness of breath are interchangeable terms used by health care providers to describe reports by patients of breathing discomfort. Patients, however, may not understand or even use these terms to describe their breathing discomfort. For example, though dyspnea may be a common term used by health care providers to describe the breathing distress of patients, rarely do patients use this term. Yet, health care providers often make clinical judgments about the decline or improvement in the patient’s condition on the basis of patient reports of symptoms.7 During the past decade, attempts have been made to understand the differences in specific terms patients use to describe their breathing discomfort.1,4-6,8,9 Given the differences in pathophysiology of conditions producing dyspnea, one would anticipate that descriptors of dyspnea would also differ. In fact, subjects with various disease states such as cardiopulmonary, vascular, neurological, etc., have been reported to use different terms to describe their breathing discomfort. Terms with similar meanings, grouped into clusters (Table 1), have been reported as unique to various pathophysiologic conditions.4
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Unique terms have been identified for diagnostic categories among studies, however there is inconsistency in these unique terms between these studies (Table 2). Terms patients use to describe breathlessness may be influenced by many factors: severity of disease,9 race or ethnicity,10 culture, gender,11 emotions,11 level of comprehension, geographic differences in terms used, terms patients learn from interacting with health care providers, local terminology and patient recall. However, recent evidence12,13 suggests that patient recall is for the most part accurate in COPD patients. In addition, the frequency and intensity of dyspnea in COPD and CHF subjects has not been fully described. There are no known reports of the differences in frequency of dyspnea between these groups. Improved understanding of dyspnea experienced in COPD and CHF and the language used by patients with these conditions could allow clinicians to intervene quickly to potentially modify the physiologic conditions precipitating the symptoms. Thus, a better understanding of the language used by COPD and CHF patients may provide additional guidance for clinicians in the timely treatment of these conditions. The purposes of this study were to determine if differences existed between reports of dyspnea in stable COPD and CHF patients in: (1) terms selected (endorsed) from a standard list of terms to describe breathing discomfort; (2) terms patients use (volunteer) to describe breathing discomfort; and (3) frequency and intensity of dyspnea in COPD and CHF patients.
METHODS AND MATERIALS Study site and population The study took place at a medical center in the Southwest. Subjects attending the subspecialty clinics for COPD and CHF were approached on the day of their outpatient visit. All data was collected from the patient and by the same investigator (AC) in a quiet area of the clinic. Subjects were told this was a study to understand words patients use to describe their breathing discomfort. The majority of subjects were interviewed after seeing the clinician. The purpose of the study and the consent process was described. After agreement to participate, subjects were asked to sign the consent form and data collection proceeded as described below. The total time for the data collection was approximately 15 minutes. The first 30 participants in each group meeting the criteria and agreeing to participate were in-
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Table II Differences in clusters endorsed by subjects with COPD and CHF Study
CHF (n)
(16)
(5) Rapid Hunger Suffocation (32)* Cluster 1 (17) Work/effort Inhalation Exhalation (34) Effort Heavy Tight Hunger (30) Tightness/constriction Hunger‡
Simon et al4 Work Hunger Elliot et al5 Mahler et al6
(39) Cluster 1, 2 and 3 (85) Work/effort
Parshall et al22
Wilcock et al14
Description of population
COPD (n)
(34) Tightness/constriction Hunger†
Stable and unstable
Stable and unstable Stable
Unstable
Stable and unstable
*Cardiac patients included cardiomyopathy, valve disease, and ischemic heart disease. † Actual term used in this study was I cannot get enough air, which was designated as a term from the hunger cluster in standard list. ‡ Actual term used in this study was out of breath, which was designated as a term from the hunger cluster in standard list. COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
cluded in the study. All COPD subjects were diagnosed by a pulmonologist and, CHF subjects were diagnosed by a cardiologist. COPD subjects could not have a chart diagnosis of heart failure and CHF subjects could not be diagnosed with COPD. Exclusion criteria were: less than 18 years of age; diagnosed with either COPD or CHF for less than 1 year; signs of instability in the past month characterized by visits to emergency room or hospitalization; mental impairment; visual or hearing deficit; or inability to read or understand English. COPD patients were required to have severe airway obstruction defined as a forced expiratory volume in 1 second (FEV1) ⱕ 45% predicted and not carry a clinical diagnosis of CHF. CHF patients were Class II, III, or IV of the American Heart Association14 and could not have a diagnosis of COPD. Class II patients are described as having fatigue, palpitation, dyspnea, or anginal pain with ordinary activity, Class III as having marked limitation with less than ordinary activities, and Class IV as having increased discomfort with minimal physical activity or fatigue,
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dyspnea, palpitation, or angina at rest. The study was approved by the Human Subjects Committee.
Procedures and measures The following sequence of data was obtained: (1) General demographic information was elicited. (2) Subjects were asked the open-ended question: “Which words would you use to describe your breathing when it is uncomfortable?” to determine what terms patients actually use (volunteered) to describe their breathing discomfort. (3) A standardized list of 15 descriptors/phrases were presented for subjects to endorse those that best described their breathing (Table 1).4 (4) The Pulmonary Functional Status and Dyspnea Questionnaire (PFSDQ), a self-report questionnaire, was used to determine the presence of dyspnea, the subject’s experience with suffocation, and the frequency and level of dyspnea intensity.15 Subject reports were also obtained for intensity of dyspnea on a scale of 0 (no shortness of breath) to 10
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Table III Age, spirometry, and left ventricular ejection fraction in 60 males with COPD and CHF COPD (n ⴝ 30)
Age (y) FEV1 liters FEV1 % pred. Ejection fraction %
CHF (n ⴝ 30)
Mean
SD
Mean
SD
P value*
68.0 1.07 31.7 NA
6.8 0.32 9.8 NA
61.1 2.65 (n ⫽ 9) 73.9 (n ⫽ 9) 26.9 (n ⫽ 28)
10.5 0.75 19.9 9.5
⬍.01 ⬍.001 ⬍.001
*t-test. FEV1, Forced expiratory volume in one second; % pred, percentage of predicted value; Ejection fraction obtained with echocardiography; NA, not available; COPD, chronic obstructive pulmonary disorder; CHF, congestive heart failure.
(very severe shortness of breath) for 3 occasions: today, on most days during the past year, and with most day to day activities. The dyspnea subscale of the PFSDQ has undergone psychometric testing initially in the PFSDQ15 and later in the PFSDQ-M.16
Statistical analysis Descriptive statistics were used to characterize the samples. Because the data were not normally distributed, nonparametric statistics were used to answer questions 1 and 2 (differences in endorsed and volunteered terms). The data met all of the assumptions for 2 technique.17 Independent 2-tailed t-tests were used for the scores measuring the intensity of dyspnea. The mean dyspnea score on most days, rated on the PFSDQ, was used to calculate the power of the study. Power analysis indicated that 18 participants in each group were needed for a power of 0.80 and an ␣ of .05.18
RESULTS Seventy-three subjects were evaluated for participation in the study. Sixty subjects met the inclusion criteria, 30 with an established diagnosis of COPD and 30 with CHF. Subjects were all males and predominantly white (83%). The COPD subjects were significantly older (68 vs 61.1 years of age, P ⬍ .01) than CHF subjects (Table 3). Ninety-seven percent of COPD and 80% of CHF subjects reported having a history of smoking. Of those with COPD who smoked, all had quit, whereas 17% of the CHF subjects continued to smoke. There was no difference (P ⫽ .33) in pack-per-year history between groups (COPD: 60 packs per year; CHF: 51 packs per year).
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Eighty-eight percent of subjects reported at least a high school education, and 7% of COPD and 10% CHF subjects completed college. There was no difference in the educational level between the COPD and CHF subjects (2 ⫽ 5.232, P ⫽ .51). As expected, COPD subjects had significantly (P ⬍ .001) greater lung impairment (FEV1 31.7 ⫾ 9.8% predicted) than CHF subjects (FEV1 73.9 ⫾ 19.9% predicted) (Table 3). Of the 9 CHF subjects with spirometry, normal to mild airway obstruction was measured, whereas the COPD subjects had severe airway impairment. Most CHF patients (n ⫽ 25) were Class II heart disease with a mean ejection fraction of 26.9 ⫾ 9.5 for the group.
Dyspnea descriptors From the list of descriptors endorsed by subjects (Table 4), 1 phrase was significantly different between groups: my breath does not go out all the way (from the exhalation cluster). This term was selected more frequently by the COPD subjects (n ⫽ 11/30) than by the CHF subjects (n ⫽ 4/30) (P ⬍ .037). On the other hand, the most frequent (ⱖ 4 subjects) descriptors volunteered by the COPD subjects were scary (n ⫽ 5), hard to breathe (n ⫽ 5), shortness of breath (n ⫽ 4), and I cannot get enough air (n ⫽ 4) (Table 5). Of these terms, only the term scary was significantly different in frequency between the COPD and CHF groups (2 ⫽ 5.455 P ⬍ .020). The most common descriptors volunteered by CHF subjects were shortness of breath (n ⫽ 9), gasping (n ⫽ 6), and I cannot get enough air (n ⫽ 4). Of these terms, only I cannot get enough air is listed in the standard list of descriptors.
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Table IV Descriptors endorsed by 60 males with COPD and CHF Descriptors
COPD (n ⴝ 30)
CHF (n ⴝ 30)
I feel that my breathing is rapid. My breath does not go out all the way. My breathing requires more work. My chest is constricted. My breathing is shallow. My breathing requires effort. I feel a hunger for more air. I feel that I am smothering. My breathing is heavy. I feel out of breath. My breath does not go in all the way. My chest feels tight. I can not get enough air. I feel that I am breathing more. I feel I am suffocating.
4 11 7 7 6 11 12 6 7 20 4 9 14 3 13
3 4* 10 3 9 16 10 11 7 17 7 9 19 6 11
*2 ⫽ 4.356, P ⬍ .037; COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
Frequency of dyspnea Table V Descriptors volunteered by 60 males with COPD and CHF Descriptors
Scary Hard to breathe Shortness of breath I cannot get enough air/oxygen Gasping Difficult breathing Wheezing Choky Tightness Out of breath Panicky Uncomfortable Exhausting Shallow
COPD (n ⴝ 30)
CHF (n ⴝ 30)
5 5 4 4
—* 3 9 4
3 3 3 2 2 2 2 2 2 2
6 3 3 — 3 1 1 — 1 2
*2 ⫽ 5.455; P ⬍ .020; COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
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Nearly all subjects (29 COPD and 25 CHF) reported experiencing dyspnea (Table 6). The frequency with which COPD and CHF subjects endorsed an intensity of dyspnea described to them as severe to very severe dyspnea was not significantly different. COPD subjects reported experiencing severe to very severe dyspnea 13.1 ⫾ 10.8 times per month, whereas CHF subjects reported 12.1 ⫾ 11.9 events per month (P ⫽ .79). The number of subjects reporting that they experienced such severe breathing distress that they “thought they would suffocate,” was nearly twice as high among COPD subjects(n ⫽ 23/30) compared with CHF subjects (n ⫽ 12/30) (P ⬍ .05).
Dyspnea intensity Reports of dyspnea intensity were determined for 3 different occasions: today, most days in the past year, and with most day-to-day activities. There was a significant difference between groups when reporting dyspnea intensity on these occasions, with COPD subjects reporting higher levels of dyspnea on all 3 occasions (P ⬍ .05 for each analysis). COPD subjects reported 1 to 2 points greater intensity on each occasion than CHF subjects. For example, COPD subjects reported a dyspnea score of 5.5 ⫾ 1.7 on most days in the past year, whereas CHF subjects re-
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Table VI Dyspnea and suffocation experience in 60 males with COPD and CHF COPD (n ⴝ 30)
Dyspnea experience* (yes/no) Frequency of severe to very severe dyspnea (per month) Suffocation experience* (yes/no) Dyspnea (0 to 10) Most days Today With activities
CHF (n ⴝ 30)
Mean
SD
Mean
SD
P value
29 13.1
10.8
25 12.1
11.9
ns ns
23 5.5 4.6 5.4
⬍.05
12 1.7 2.1 2.0
4.1 2.6 3.5
2.6 2.6 2.1
⬍.05 ⬍.05 ⬍.05
*Chi square.
ported a lower intensity of dyspnea (4.1 ⫾ 2.5, P ⬍ .05).
DISCUSSION Our findings are consistent with the reports of others in that there were both differences and similarities in terms used by COPD and CHF subjects in describing breathlessness. Our findings, however, do not necessarily support the uniqueness of terms among the COPD and CHF populations. In this study, the only term unique to these 2 groups was from the exhalation cluster. COPD subjects endorsed terms from the exhalation cluster more frequently than CHF subjects. This cluster has been previously reported in one study as unique to asthma,4 and in another study as unique to CHF,6 but not previously identified as unique to COPD subjects. Selection of the exhalation cluster, however, has been reported in normal subjects after laboratory-induced changes in lung mechanics.8 In that study, changes in lung mechanics were induced followed by a request to have the subject identify a term (from the standardized list) that described their breathing. When resistance on exhalation was added to the breathing circuit, these normal subjects endorsed the term my breath does not go out all the way from the exhalation cluster. Selecting the sensation of difficulty exhaling is consistent with the pathophysiologic alterations of air trapping from COPD.19 Given the frequency of hyperinflation in COPD patients, and the total number of COPD subjects previously studied (n ⫽ ⬎ 100), it is unclear why this cluster has not been
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identified in earlier work as unique to COPD subjects. It may be that when focusing on comparisons solely between COPD and CHF subjects, there is a real difference in sensation on this cluster alone. We did not find endorsement of a single term or a cluster unique to CHF subjects, unlike the COPD subjects. Many terms identified by CHF subjects were shared with COPD subjects. One interpretation of these results is that CHF share selected pathological changes with COPD subjects. Though CHF subjects do not experience hyperinflation, they have been measured to have inspiratory and expiratory muscle weakness.20,21 Respiratory muscle weakness is also associated with COPD patients. Weakness on inhalation could be associated with terms related to difficulty with inspiration, whereas weakness on exhaling could be associated with perceived difficulty on expiration. Because exhalation is usually a passive activity, one would not expect difficulty with exhalation in most patients without the presence of expiratory slowing. Mahler reported that the most common descriptors identified by 17 stable CHF subjects were from 3 clusters: inhalation, exhalation, and work/effort.6 In our study of stable CHF, on the other hand, the exhalation cluster was endorsed more frequently by the COPD subjects, with only 4 CHF subjects endorsing this cluster (Table 4). On the other hand, the inhalation cluster (now included in the shallow cluster) was selected infrequently by both groups (4 COPD and 7 CHF). This is the first study comparing an equal number of stable, matched COPD and CHF subjects. Our
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CHF subsample was larger (n ⫽ 30) than the corresponding subsample of Mahler et al (n ⫽ 17).6 One could therefore argue, with respect to the exhalation cluster, that our findings may be more representative of CHF subjects than previously reported. On the other hand, we did not find differences in 14 of the 15 endorsed terms between groups. Differences may have existed with a larger sample or in a mixed group of stable and unstable subjects. In an attempt to determine whether subjects used terms similar to the standard list of 15 terms (which they were later asked to endorse from Table 1), subjects were first asked to volunteer words in response to the question: “Which words would you use to describe your breathing when it is uncomfortable?” (Table 5). We expected these terms to be closely associated or identical to the standardized list of 15 terms. At most, only 5 subjects (16.6%) from the COPD group volunteered the same descriptions of their breathlessness, and most of these terms were not found in the standard list of 15. The terms scary and hard to breathe were most frequently volunteered by COPD subjects. This was followed by 4 subjects each reporting shortness of breath and I cannot get enough air as describing their breathing discomfort. Only the COPD subjects volunteered that scary described their breathing discomfort. Whereas scary is an emotional description of an experience, the term these subjects selected underscores the emotional impact of symptoms on patients. In addition, the term scary may relate to the higher intensity of the dyspnea reported by our COPD patients, or it might relate to differences in sensory quality between these groups, because twice as many participants with COPD as those with CHF reported a feeling of suffocation, in response to the suffocation question on the PFSDQ (Table 6). CHF subjects volunteered similar terms to those with COPD, but there appeared to be more agreement in the terms volunteered among CHF subjects. For example, 9 (30%) CHF subjects reported shortness of breath and 6 (20%) gasping. Parshall et al found that CHF patients used the following terms to describe their breathing distress before seeking emergent care: short of breath or breathless (35% of subjects), couldn’t breathe (33%), and couldn’t get enough air or breath (30%).22 These terms compare favorably with the terms shortness of breath and I cannot get enough air volunteered by subjects in our study. However, gasping was the second most common term volunteered by CHF subjects in our study, but it was used by fewer than 10% of subjects in the study by Parshall et al.22 The term gasping was volunteered by 6 CHF subjects and 3 COPD subjects in our study. Origi-
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nally, gasping was a cluster associated with patients with COPD, neurological, and interstitial lung disease.4 This cluster, however, was not felt to discriminate sufficiently between groups and was removed from the standard list. In work by Elliot et al,5 30 stable and unstable cardiac (cardiomyopathy, valve and/or ischemic heart disease) subjects were found to endorse only 1 cluster, whereas COPD subjects endorsed terms from 9 of the 12 clusters. This would suggest more uniformity of identifying terms among the CHF than COPD subjects, or conversely, less uniformity in selecting terms among the COPD subjects. There are several problems in comparing work (including our own) in the study of dyspnea descriptors. First, our work, like others, applies predominantly to Caucasian males, thereby limiting generalizability of findings to these groups. Second, the heterogeneity of diagnoses, number of subjects, and acuity levels are not uniform among other studies. For example, one study included patients with multiple cardiac pathologies.5 Of the 4 remaining studies of CHF; 1 was of stable CHF;6 1 was of unstable CHF subjects;22 and 2 were of combined stable and unstable subjects.4,9 Among the 4 studies of COPD subjects, 3 combined stable and unstable subjects, (range from 16-39 subjects).4,5,9 Only 1 study included stable COPD (n ⫽ 85) and CHF (n ⫽ 17) subjects.6 To further complicate comparisons across studies, the number of subjects within diagnostic categories in the cited studies (range 5 to 34 subjects) may have also affected comparisons across studies. One would anticipate that the dyspnea intensity or breathing distress experienced by stable subjects would be less severe and qualitatively different than those experiencing acute symptoms. Third, one also must take into account the potential presence of COPD in cardiac patients, because both often share a significant smoking history. In our study, we did not obtain spirometry in the CHF group; however, of those 9 with spirometry, mild airway obstruction was measured. This degree of airway obstruction is, however, not usually associated with symptoms of dyspnea.23 The issue of patient stability is important, because the level of acuity affects the intensity of symptoms. For example, Parshall et al24 measured differences in intensity of dyspnea in subjects from the time of onset of symptoms to seeking emergency care. Those reporting a duration of dyspnea of 3 days or less before seeking emergent care reported a mean increase in intensity of dyspnea of approximately 3 points on a 0-to-10 scale averaged across 11 descriptors. It is also possible that pa-
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tients in acute distress will identify qualitatively different terms than those with chronic or stable symptoms. Additional factors that may explain the lack of unique terms in the CHF subjects are reflected in the numerous terms they endorse. For example, subjects studied by Parshall et al selected a median of 12 descriptors to describe their breathing before seeking emergent care.22 Elliot et al5 reported that 18 terms formed a single cluster in subjects with cardiac disease, COPD, asthma, and restrictive disease. Most patients with COPD and CHF report experiencing dyspnea.9,15,25 In a study of 131 male subjects with varying degrees of COPD, all (100%) indicated that they experienced dyspnea.15 In the current study, we found that patients with stable COPD (97%) and CHF (83%) experience dyspnea similarly (P ⫽ .20), and the sensory qualities they reported were, on the whole, similar. In addition, the frequency of severe to very severe dyspnea did not differ between groups. It has been known that dyspnea is not a unique symptom to COPD patients, however, dyspnea is often more commonly attributed to COPD patients. This study is supportive of findings in the emergent care setting whereby CHF patients must cope with this symptom with the same frequency as COPD patients. The intensity of dyspnea on a daily basis and overall in the past year, however, was different between groups. COPD subjects report a greater intensity of dyspnea on most days and with daily activities than CHF subjects. The intensity of dyspnea on most days (5.5 ⫾ 1.7) reported by the COPD subjects is consistent with earlier work using the PFSDQ where an intensity of 5.6 ⫾ 2.0 was reported.15 These results are also similar with a longitudinal study where COPD subjects reported levels of 5.2 to 5.7 during a 5-year period.26 The severity of dyspnea with day-to-day activities was greater in COPD subjects (5.4 ⫾ 2.0) than in CHF subjects (3.5 ⫾ 2.1). These findings are also similar to those of Mahler et al, who reported more severe dyspnea among COPD subjects (4.3 ⫾ 2.1) than CHF subjects (5.7 ⫾ 1.8) using a measure in which lower scores represent greater dyspnea severity.4 Parshall et al24 also reported dyspnea intensity in CHF subjects a week before seeking health care and on admission for emergent care using a 0-to-10 numeric rating scale. Dyspnea intensity of 4.4 ⫾ 3.3 was reported a week before and was greater (6.7 ⫾ 2.7) on emergency admission. Taken together, these findings suggest that though dyspnea is a symptom experienced by both groups, dyspnea intensity during
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stable conditions is higher among COPD patients than CHF patients.
SUMMARY We found that stable COPD and CHF patients recognize a variety of terms that they feel describe their breathing distress. There was, however, only one term (my breath does not go out all the way) from the exhalation cluster that was unique to either diagnosis (COPD). When patients were asked to volunteer terms, both groups identified a variety of terms that they felt best described their breathing when it is uncomfortable. Few of these terms were identified in the standard list of descriptors. Patients with both COPD and CHF report experiencing dyspnea with similar frequency, however the intensity of dyspnea is greater for COPD than CHF subjects. The study highlights the personal experience of dyspnea, which may be difficult to capture when patients are presented with a standard list of terms. The authors wish to thank the following persons for their assistance in the development of the manuscript: J Anholm, MD, E Bossert, RN, PhD, M Burns, RN, PhD, K Busby, MD, R Crowell, MD, F De La Cruz, LA Hawkins, RN, NP, PM Meek, RN, PhD, Kristi Morrow, M Parshall, RN, PhD, NL Specht, MD, and L Van Cleve, RN, PhD.
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Caroci and Lareau 19. Manning HL, Schwartzstein RM. Pathophysiology of dyspnea. N Engl J Med 1995;333:1547-53. 20. McParland C, Krishnan B, Wang Y, Gallagher CG. Inspiratory muscle weakness and dyspnea in chronic heart failure. Am Rev Respir Dis 1992;146:457-72. 21. Mancini DM, Henson D, LaManca J, Levine S. Respiratory muscle function and dyspnea in patients with chronic congestive heart failure. Circulation 1992;86:909-18. 22. Parshall MB, Welsh JD, Brockopp DY, Heiser RM, Schooler MP, Cassidy KB. Reliability and validity of dyspnea sensory quality descriptors in heart failure patients treated in an emergency department. Heart Lung 2001;30:57-65. 23. Global Initiative for Chronic Obstructive Pulmonary Disease. Available at: http://www.goldcopd.com. Accessed July 25, 2003. 24. Parshall MB, Welsh JD, Brockopp DY, Heiser RM, Schooler MP, Cassidy KB. Dyspnea duration, distress, and intensity in emergency department visits for heart failure. Heart Lung 2001;30:47-56. 25. Eakin E, Kaplan R, Ries A, Sassi-Dambron D. Patients self report of dyspnea. an important and independent outcome in chronic obstructive pulmonary disease. Ann Behav Med 1996;18:87-90. 26. Lareau SC, Meek PM, Press D, Anholm JD, Roos P. Dyspnea in patients with chronic obstructive pulmonary disease. does dyspnea worsen longitudinally in the presence of declining lung function? Heart Lung 1999;28:65-73.
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OBJECTIVES: The purpose of this study was to determine whether differences existed between reports of dyspnea in stable chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF) subjects. METHODS: Sixty stable COPD (n ⫽ 30) and CHF (n ⫽ 30) male, outpatient subjects were studied. Subjects were asked to both endorse (from a pre-designed list of descriptors) and volunteer terms that best described their breathing discomfort. Subjects also reported the frequency and the intensity of breathlessness (0-10 scale) using the Pulmonary Functional Status and Dyspnea Questionnaire. RESULTS: From the endorsed list of descriptors, my breath does not go out all the way, was significantly different (COPD ⫽ 11, CHF ⫽ 4, P ⬍ .05) between groups. The most common terms volunteered by COPD subjects were scary (n ⫽ 5, P ⬍ .02), hard to breathe (n ⫽ 5), shortness of breath (n ⫽ 4), and cannot get enough air (n ⫽ 4), whereas CHF subjects volunteered the terms, shortness of breath (n ⫽ 9), gasping (n ⫽ 6), and cannot get enough air (n ⫽ 4). There was no difference in the frequency with which both groups experienced dyspnea or times per month they reported severe to very severe dyspnea. Subjects with COPD experienced a higher intensity of breathlessness on different occasions P ⬍ .05. CONCLUSIONS: Stable COPD and CHF patients use and recognize a variety of terms that describe their breathing distress. There was, however, only 1 unique term among the endorsed and volunteered terms, and that was among the COPD subjects. COPD and CHF subjects shared many common terms and also experienced dyspnea with similar frequency. The uniqueness of terms among the COPD group was less clear. The study highlights the variability of the dyspnea experience among COPD and CHF patients and the potential difficulty identifying unique dyspnea terms in these subjects. (Heart Lung® 2004;33:102-10.)
INTRODUCTION Dyspnea, or breathlessness, is the most common symptom reported by patients with chronic obstructive pulmonary disease (COPD)1 and congestive heart failure (CHF)1-3 seeking medical help. Patients with COPD and CHF are reported to use unique terms when describing breathlessness.4-6 It has been proposed that these terms are sufficiently From the aSchool of Nursing, Loma Linda University, Loma Linda, California, bPulmonary Section, New Mexico Health Care System Albuquerque, New Mexico. Presented in part at the American Thoracic Society International Conference, Atlanta, Ga, May 19-22, 2002. Reprint requests: Adelaide Caroci, RN, MSN, Rua: Candal, 1 Apt. 42, Jd. Amalia- Sa˜o Paulo, SP 05890-030, Brazil. 0147-9563/$ – see front matter Copyright © 2004 by Elsevier Inc. doi:10.1016/j.hrtlng.2003.11.004
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unique to be used to diagnose various abnormalities and patient response to treatment.6 These same studies however, have been inconsistent in identifying the terms patients use within various diagnostic categories. Before adopting the notion of unique terms among diagnostic groups, greater clarity about the terms patients use to communicate their breathlessness is required. We therefore studied the differences in both the reported and the volunteered terms patients use to describe dyspnea in 2 diagnostic groups: COPD and CHF patients. We anticipated that the selection of terms from the standardized list4 would be similar to those reported in the literature. Furthermore, we anticipated that the terms volunteered (without benefit of prompting from a list) by patients would be similar to this standardized list.
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Table I Clusters and descriptors of breathlessness Clusters
Descriptors
Rapid
I feel that my breathing is rapid. Exhalation My breath does not go out all the way. Shallow My breath does not go in all the way. My breathing is shallow. Work My breathing requires effort. My breathing requires more work. Suffocating I feel that I am smothering. I feel I am suffocating. Hunger I feel a hunger for more air. I feel out of breath. I cannot get enough air. Tight My chest feels tight. My chest is constricted. Heavy My breathing is heavy. I feel that I am breathing more. Derived from Simon et al, 1990.4
Dyspnea, breathlessness, and shortness of breath are interchangeable terms used by health care providers to describe reports by patients of breathing discomfort. Patients, however, may not understand or even use these terms to describe their breathing discomfort. For example, though dyspnea may be a common term used by health care providers to describe the breathing distress of patients, rarely do patients use this term. Yet, health care providers often make clinical judgments about the decline or improvement in the patient’s condition on the basis of patient reports of symptoms.7 During the past decade, attempts have been made to understand the differences in specific terms patients use to describe their breathing discomfort.1,4-6,8,9 Given the differences in pathophysiology of conditions producing dyspnea, one would anticipate that descriptors of dyspnea would also differ. In fact, subjects with various disease states such as cardiopulmonary, vascular, neurological, etc., have been reported to use different terms to describe their breathing discomfort. Terms with similar meanings, grouped into clusters (Table 1), have been reported as unique to various pathophysiologic conditions.4
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Unique terms have been identified for diagnostic categories among studies, however there is inconsistency in these unique terms between these studies (Table 2). Terms patients use to describe breathlessness may be influenced by many factors: severity of disease,9 race or ethnicity,10 culture, gender,11 emotions,11 level of comprehension, geographic differences in terms used, terms patients learn from interacting with health care providers, local terminology and patient recall. However, recent evidence12,13 suggests that patient recall is for the most part accurate in COPD patients. In addition, the frequency and intensity of dyspnea in COPD and CHF subjects has not been fully described. There are no known reports of the differences in frequency of dyspnea between these groups. Improved understanding of dyspnea experienced in COPD and CHF and the language used by patients with these conditions could allow clinicians to intervene quickly to potentially modify the physiologic conditions precipitating the symptoms. Thus, a better understanding of the language used by COPD and CHF patients may provide additional guidance for clinicians in the timely treatment of these conditions. The purposes of this study were to determine if differences existed between reports of dyspnea in stable COPD and CHF patients in: (1) terms selected (endorsed) from a standard list of terms to describe breathing discomfort; (2) terms patients use (volunteer) to describe breathing discomfort; and (3) frequency and intensity of dyspnea in COPD and CHF patients.
METHODS AND MATERIALS Study site and population The study took place at a medical center in the Southwest. Subjects attending the subspecialty clinics for COPD and CHF were approached on the day of their outpatient visit. All data was collected from the patient and by the same investigator (AC) in a quiet area of the clinic. Subjects were told this was a study to understand words patients use to describe their breathing discomfort. The majority of subjects were interviewed after seeing the clinician. The purpose of the study and the consent process was described. After agreement to participate, subjects were asked to sign the consent form and data collection proceeded as described below. The total time for the data collection was approximately 15 minutes. The first 30 participants in each group meeting the criteria and agreeing to participate were in-
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Table II Differences in clusters endorsed by subjects with COPD and CHF Study
CHF (n)
(16)
(5) Rapid Hunger Suffocation (32)* Cluster 1 (17) Work/effort Inhalation Exhalation (34) Effort Heavy Tight Hunger (30) Tightness/constriction Hunger‡
Simon et al4 Work Hunger Elliot et al5 Mahler et al6
(39) Cluster 1, 2 and 3 (85) Work/effort
Parshall et al22
Wilcock et al14
Description of population
COPD (n)
(34) Tightness/constriction Hunger†
Stable and unstable
Stable and unstable Stable
Unstable
Stable and unstable
*Cardiac patients included cardiomyopathy, valve disease, and ischemic heart disease. † Actual term used in this study was I cannot get enough air, which was designated as a term from the hunger cluster in standard list. ‡ Actual term used in this study was out of breath, which was designated as a term from the hunger cluster in standard list. COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
cluded in the study. All COPD subjects were diagnosed by a pulmonologist and, CHF subjects were diagnosed by a cardiologist. COPD subjects could not have a chart diagnosis of heart failure and CHF subjects could not be diagnosed with COPD. Exclusion criteria were: less than 18 years of age; diagnosed with either COPD or CHF for less than 1 year; signs of instability in the past month characterized by visits to emergency room or hospitalization; mental impairment; visual or hearing deficit; or inability to read or understand English. COPD patients were required to have severe airway obstruction defined as a forced expiratory volume in 1 second (FEV1) ⱕ 45% predicted and not carry a clinical diagnosis of CHF. CHF patients were Class II, III, or IV of the American Heart Association14 and could not have a diagnosis of COPD. Class II patients are described as having fatigue, palpitation, dyspnea, or anginal pain with ordinary activity, Class III as having marked limitation with less than ordinary activities, and Class IV as having increased discomfort with minimal physical activity or fatigue,
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dyspnea, palpitation, or angina at rest. The study was approved by the Human Subjects Committee.
Procedures and measures The following sequence of data was obtained: (1) General demographic information was elicited. (2) Subjects were asked the open-ended question: “Which words would you use to describe your breathing when it is uncomfortable?” to determine what terms patients actually use (volunteered) to describe their breathing discomfort. (3) A standardized list of 15 descriptors/phrases were presented for subjects to endorse those that best described their breathing (Table 1).4 (4) The Pulmonary Functional Status and Dyspnea Questionnaire (PFSDQ), a self-report questionnaire, was used to determine the presence of dyspnea, the subject’s experience with suffocation, and the frequency and level of dyspnea intensity.15 Subject reports were also obtained for intensity of dyspnea on a scale of 0 (no shortness of breath) to 10
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Table III Age, spirometry, and left ventricular ejection fraction in 60 males with COPD and CHF COPD (n ⴝ 30)
Age (y) FEV1 liters FEV1 % pred. Ejection fraction %
CHF (n ⴝ 30)
Mean
SD
Mean
SD
P value*
68.0 1.07 31.7 NA
6.8 0.32 9.8 NA
61.1 2.65 (n ⫽ 9) 73.9 (n ⫽ 9) 26.9 (n ⫽ 28)
10.5 0.75 19.9 9.5
⬍.01 ⬍.001 ⬍.001
*t-test. FEV1, Forced expiratory volume in one second; % pred, percentage of predicted value; Ejection fraction obtained with echocardiography; NA, not available; COPD, chronic obstructive pulmonary disorder; CHF, congestive heart failure.
(very severe shortness of breath) for 3 occasions: today, on most days during the past year, and with most day to day activities. The dyspnea subscale of the PFSDQ has undergone psychometric testing initially in the PFSDQ15 and later in the PFSDQ-M.16
Statistical analysis Descriptive statistics were used to characterize the samples. Because the data were not normally distributed, nonparametric statistics were used to answer questions 1 and 2 (differences in endorsed and volunteered terms). The data met all of the assumptions for 2 technique.17 Independent 2-tailed t-tests were used for the scores measuring the intensity of dyspnea. The mean dyspnea score on most days, rated on the PFSDQ, was used to calculate the power of the study. Power analysis indicated that 18 participants in each group were needed for a power of 0.80 and an ␣ of .05.18
RESULTS Seventy-three subjects were evaluated for participation in the study. Sixty subjects met the inclusion criteria, 30 with an established diagnosis of COPD and 30 with CHF. Subjects were all males and predominantly white (83%). The COPD subjects were significantly older (68 vs 61.1 years of age, P ⬍ .01) than CHF subjects (Table 3). Ninety-seven percent of COPD and 80% of CHF subjects reported having a history of smoking. Of those with COPD who smoked, all had quit, whereas 17% of the CHF subjects continued to smoke. There was no difference (P ⫽ .33) in pack-per-year history between groups (COPD: 60 packs per year; CHF: 51 packs per year).
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Eighty-eight percent of subjects reported at least a high school education, and 7% of COPD and 10% CHF subjects completed college. There was no difference in the educational level between the COPD and CHF subjects (2 ⫽ 5.232, P ⫽ .51). As expected, COPD subjects had significantly (P ⬍ .001) greater lung impairment (FEV1 31.7 ⫾ 9.8% predicted) than CHF subjects (FEV1 73.9 ⫾ 19.9% predicted) (Table 3). Of the 9 CHF subjects with spirometry, normal to mild airway obstruction was measured, whereas the COPD subjects had severe airway impairment. Most CHF patients (n ⫽ 25) were Class II heart disease with a mean ejection fraction of 26.9 ⫾ 9.5 for the group.
Dyspnea descriptors From the list of descriptors endorsed by subjects (Table 4), 1 phrase was significantly different between groups: my breath does not go out all the way (from the exhalation cluster). This term was selected more frequently by the COPD subjects (n ⫽ 11/30) than by the CHF subjects (n ⫽ 4/30) (P ⬍ .037). On the other hand, the most frequent (ⱖ 4 subjects) descriptors volunteered by the COPD subjects were scary (n ⫽ 5), hard to breathe (n ⫽ 5), shortness of breath (n ⫽ 4), and I cannot get enough air (n ⫽ 4) (Table 5). Of these terms, only the term scary was significantly different in frequency between the COPD and CHF groups (2 ⫽ 5.455 P ⬍ .020). The most common descriptors volunteered by CHF subjects were shortness of breath (n ⫽ 9), gasping (n ⫽ 6), and I cannot get enough air (n ⫽ 4). Of these terms, only I cannot get enough air is listed in the standard list of descriptors.
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Table IV Descriptors endorsed by 60 males with COPD and CHF Descriptors
COPD (n ⴝ 30)
CHF (n ⴝ 30)
I feel that my breathing is rapid. My breath does not go out all the way. My breathing requires more work. My chest is constricted. My breathing is shallow. My breathing requires effort. I feel a hunger for more air. I feel that I am smothering. My breathing is heavy. I feel out of breath. My breath does not go in all the way. My chest feels tight. I can not get enough air. I feel that I am breathing more. I feel I am suffocating.
4 11 7 7 6 11 12 6 7 20 4 9 14 3 13
3 4* 10 3 9 16 10 11 7 17 7 9 19 6 11
*2 ⫽ 4.356, P ⬍ .037; COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
Frequency of dyspnea Table V Descriptors volunteered by 60 males with COPD and CHF Descriptors
Scary Hard to breathe Shortness of breath I cannot get enough air/oxygen Gasping Difficult breathing Wheezing Choky Tightness Out of breath Panicky Uncomfortable Exhausting Shallow
COPD (n ⴝ 30)
CHF (n ⴝ 30)
5 5 4 4
—* 3 9 4
3 3 3 2 2 2 2 2 2 2
6 3 3 — 3 1 1 — 1 2
*2 ⫽ 5.455; P ⬍ .020; COPD, Chronic obstructive pulmonary disorder; CHF, congestive heart failure.
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Nearly all subjects (29 COPD and 25 CHF) reported experiencing dyspnea (Table 6). The frequency with which COPD and CHF subjects endorsed an intensity of dyspnea described to them as severe to very severe dyspnea was not significantly different. COPD subjects reported experiencing severe to very severe dyspnea 13.1 ⫾ 10.8 times per month, whereas CHF subjects reported 12.1 ⫾ 11.9 events per month (P ⫽ .79). The number of subjects reporting that they experienced such severe breathing distress that they “thought they would suffocate,” was nearly twice as high among COPD subjects(n ⫽ 23/30) compared with CHF subjects (n ⫽ 12/30) (P ⬍ .05).
Dyspnea intensity Reports of dyspnea intensity were determined for 3 different occasions: today, most days in the past year, and with most day-to-day activities. There was a significant difference between groups when reporting dyspnea intensity on these occasions, with COPD subjects reporting higher levels of dyspnea on all 3 occasions (P ⬍ .05 for each analysis). COPD subjects reported 1 to 2 points greater intensity on each occasion than CHF subjects. For example, COPD subjects reported a dyspnea score of 5.5 ⫾ 1.7 on most days in the past year, whereas CHF subjects re-
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Table VI Dyspnea and suffocation experience in 60 males with COPD and CHF COPD (n ⴝ 30)
Dyspnea experience* (yes/no) Frequency of severe to very severe dyspnea (per month) Suffocation experience* (yes/no) Dyspnea (0 to 10) Most days Today With activities
CHF (n ⴝ 30)
Mean
SD
Mean
SD
P value
29 13.1
10.8
25 12.1
11.9
ns ns
23 5.5 4.6 5.4
⬍.05
12 1.7 2.1 2.0
4.1 2.6 3.5
2.6 2.6 2.1
⬍.05 ⬍.05 ⬍.05
*Chi square.
ported a lower intensity of dyspnea (4.1 ⫾ 2.5, P ⬍ .05).
DISCUSSION Our findings are consistent with the reports of others in that there were both differences and similarities in terms used by COPD and CHF subjects in describing breathlessness. Our findings, however, do not necessarily support the uniqueness of terms among the COPD and CHF populations. In this study, the only term unique to these 2 groups was from the exhalation cluster. COPD subjects endorsed terms from the exhalation cluster more frequently than CHF subjects. This cluster has been previously reported in one study as unique to asthma,4 and in another study as unique to CHF,6 but not previously identified as unique to COPD subjects. Selection of the exhalation cluster, however, has been reported in normal subjects after laboratory-induced changes in lung mechanics.8 In that study, changes in lung mechanics were induced followed by a request to have the subject identify a term (from the standardized list) that described their breathing. When resistance on exhalation was added to the breathing circuit, these normal subjects endorsed the term my breath does not go out all the way from the exhalation cluster. Selecting the sensation of difficulty exhaling is consistent with the pathophysiologic alterations of air trapping from COPD.19 Given the frequency of hyperinflation in COPD patients, and the total number of COPD subjects previously studied (n ⫽ ⬎ 100), it is unclear why this cluster has not been
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identified in earlier work as unique to COPD subjects. It may be that when focusing on comparisons solely between COPD and CHF subjects, there is a real difference in sensation on this cluster alone. We did not find endorsement of a single term or a cluster unique to CHF subjects, unlike the COPD subjects. Many terms identified by CHF subjects were shared with COPD subjects. One interpretation of these results is that CHF share selected pathological changes with COPD subjects. Though CHF subjects do not experience hyperinflation, they have been measured to have inspiratory and expiratory muscle weakness.20,21 Respiratory muscle weakness is also associated with COPD patients. Weakness on inhalation could be associated with terms related to difficulty with inspiration, whereas weakness on exhaling could be associated with perceived difficulty on expiration. Because exhalation is usually a passive activity, one would not expect difficulty with exhalation in most patients without the presence of expiratory slowing. Mahler reported that the most common descriptors identified by 17 stable CHF subjects were from 3 clusters: inhalation, exhalation, and work/effort.6 In our study of stable CHF, on the other hand, the exhalation cluster was endorsed more frequently by the COPD subjects, with only 4 CHF subjects endorsing this cluster (Table 4). On the other hand, the inhalation cluster (now included in the shallow cluster) was selected infrequently by both groups (4 COPD and 7 CHF). This is the first study comparing an equal number of stable, matched COPD and CHF subjects. Our
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CHF subsample was larger (n ⫽ 30) than the corresponding subsample of Mahler et al (n ⫽ 17).6 One could therefore argue, with respect to the exhalation cluster, that our findings may be more representative of CHF subjects than previously reported. On the other hand, we did not find differences in 14 of the 15 endorsed terms between groups. Differences may have existed with a larger sample or in a mixed group of stable and unstable subjects. In an attempt to determine whether subjects used terms similar to the standard list of 15 terms (which they were later asked to endorse from Table 1), subjects were first asked to volunteer words in response to the question: “Which words would you use to describe your breathing when it is uncomfortable?” (Table 5). We expected these terms to be closely associated or identical to the standardized list of 15 terms. At most, only 5 subjects (16.6%) from the COPD group volunteered the same descriptions of their breathlessness, and most of these terms were not found in the standard list of 15. The terms scary and hard to breathe were most frequently volunteered by COPD subjects. This was followed by 4 subjects each reporting shortness of breath and I cannot get enough air as describing their breathing discomfort. Only the COPD subjects volunteered that scary described their breathing discomfort. Whereas scary is an emotional description of an experience, the term these subjects selected underscores the emotional impact of symptoms on patients. In addition, the term scary may relate to the higher intensity of the dyspnea reported by our COPD patients, or it might relate to differences in sensory quality between these groups, because twice as many participants with COPD as those with CHF reported a feeling of suffocation, in response to the suffocation question on the PFSDQ (Table 6). CHF subjects volunteered similar terms to those with COPD, but there appeared to be more agreement in the terms volunteered among CHF subjects. For example, 9 (30%) CHF subjects reported shortness of breath and 6 (20%) gasping. Parshall et al found that CHF patients used the following terms to describe their breathing distress before seeking emergent care: short of breath or breathless (35% of subjects), couldn’t breathe (33%), and couldn’t get enough air or breath (30%).22 These terms compare favorably with the terms shortness of breath and I cannot get enough air volunteered by subjects in our study. However, gasping was the second most common term volunteered by CHF subjects in our study, but it was used by fewer than 10% of subjects in the study by Parshall et al.22 The term gasping was volunteered by 6 CHF subjects and 3 COPD subjects in our study. Origi-
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nally, gasping was a cluster associated with patients with COPD, neurological, and interstitial lung disease.4 This cluster, however, was not felt to discriminate sufficiently between groups and was removed from the standard list. In work by Elliot et al,5 30 stable and unstable cardiac (cardiomyopathy, valve and/or ischemic heart disease) subjects were found to endorse only 1 cluster, whereas COPD subjects endorsed terms from 9 of the 12 clusters. This would suggest more uniformity of identifying terms among the CHF than COPD subjects, or conversely, less uniformity in selecting terms among the COPD subjects. There are several problems in comparing work (including our own) in the study of dyspnea descriptors. First, our work, like others, applies predominantly to Caucasian males, thereby limiting generalizability of findings to these groups. Second, the heterogeneity of diagnoses, number of subjects, and acuity levels are not uniform among other studies. For example, one study included patients with multiple cardiac pathologies.5 Of the 4 remaining studies of CHF; 1 was of stable CHF;6 1 was of unstable CHF subjects;22 and 2 were of combined stable and unstable subjects.4,9 Among the 4 studies of COPD subjects, 3 combined stable and unstable subjects, (range from 16-39 subjects).4,5,9 Only 1 study included stable COPD (n ⫽ 85) and CHF (n ⫽ 17) subjects.6 To further complicate comparisons across studies, the number of subjects within diagnostic categories in the cited studies (range 5 to 34 subjects) may have also affected comparisons across studies. One would anticipate that the dyspnea intensity or breathing distress experienced by stable subjects would be less severe and qualitatively different than those experiencing acute symptoms. Third, one also must take into account the potential presence of COPD in cardiac patients, because both often share a significant smoking history. In our study, we did not obtain spirometry in the CHF group; however, of those 9 with spirometry, mild airway obstruction was measured. This degree of airway obstruction is, however, not usually associated with symptoms of dyspnea.23 The issue of patient stability is important, because the level of acuity affects the intensity of symptoms. For example, Parshall et al24 measured differences in intensity of dyspnea in subjects from the time of onset of symptoms to seeking emergency care. Those reporting a duration of dyspnea of 3 days or less before seeking emergent care reported a mean increase in intensity of dyspnea of approximately 3 points on a 0-to-10 scale averaged across 11 descriptors. It is also possible that pa-
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tients in acute distress will identify qualitatively different terms than those with chronic or stable symptoms. Additional factors that may explain the lack of unique terms in the CHF subjects are reflected in the numerous terms they endorse. For example, subjects studied by Parshall et al selected a median of 12 descriptors to describe their breathing before seeking emergent care.22 Elliot et al5 reported that 18 terms formed a single cluster in subjects with cardiac disease, COPD, asthma, and restrictive disease. Most patients with COPD and CHF report experiencing dyspnea.9,15,25 In a study of 131 male subjects with varying degrees of COPD, all (100%) indicated that they experienced dyspnea.15 In the current study, we found that patients with stable COPD (97%) and CHF (83%) experience dyspnea similarly (P ⫽ .20), and the sensory qualities they reported were, on the whole, similar. In addition, the frequency of severe to very severe dyspnea did not differ between groups. It has been known that dyspnea is not a unique symptom to COPD patients, however, dyspnea is often more commonly attributed to COPD patients. This study is supportive of findings in the emergent care setting whereby CHF patients must cope with this symptom with the same frequency as COPD patients. The intensity of dyspnea on a daily basis and overall in the past year, however, was different between groups. COPD subjects report a greater intensity of dyspnea on most days and with daily activities than CHF subjects. The intensity of dyspnea on most days (5.5 ⫾ 1.7) reported by the COPD subjects is consistent with earlier work using the PFSDQ where an intensity of 5.6 ⫾ 2.0 was reported.15 These results are also similar with a longitudinal study where COPD subjects reported levels of 5.2 to 5.7 during a 5-year period.26 The severity of dyspnea with day-to-day activities was greater in COPD subjects (5.4 ⫾ 2.0) than in CHF subjects (3.5 ⫾ 2.1). These findings are also similar to those of Mahler et al, who reported more severe dyspnea among COPD subjects (4.3 ⫾ 2.1) than CHF subjects (5.7 ⫾ 1.8) using a measure in which lower scores represent greater dyspnea severity.4 Parshall et al24 also reported dyspnea intensity in CHF subjects a week before seeking health care and on admission for emergent care using a 0-to-10 numeric rating scale. Dyspnea intensity of 4.4 ⫾ 3.3 was reported a week before and was greater (6.7 ⫾ 2.7) on emergency admission. Taken together, these findings suggest that though dyspnea is a symptom experienced by both groups, dyspnea intensity during
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stable conditions is higher among COPD patients than CHF patients.
SUMMARY We found that stable COPD and CHF patients recognize a variety of terms that they feel describe their breathing distress. There was, however, only one term (my breath does not go out all the way) from the exhalation cluster that was unique to either diagnosis (COPD). When patients were asked to volunteer terms, both groups identified a variety of terms that they felt best described their breathing when it is uncomfortable. Few of these terms were identified in the standard list of descriptors. Patients with both COPD and CHF report experiencing dyspnea with similar frequency, however the intensity of dyspnea is greater for COPD than CHF subjects. The study highlights the personal experience of dyspnea, which may be difficult to capture when patients are presented with a standard list of terms. The authors wish to thank the following persons for their assistance in the development of the manuscript: J Anholm, MD, E Bossert, RN, PhD, M Burns, RN, PhD, K Busby, MD, R Crowell, MD, F De La Cruz, LA Hawkins, RN, NP, PM Meek, RN, PhD, Kristi Morrow, M Parshall, RN, PhD, NL Specht, MD, and L Van Cleve, RN, PhD.
REFERENCES 1. Parshall MB. Adult emergency visits for chronic cardiorespiratory disease. does dyspnea matter? Nurs Res 1999;48:6270. 2. Friedman MM. Older adults symptoms and their duration before hospitalization of heart failure. Heart Lung 1997;26: 169-76. 3. Welsh DJ, Heiser RM, Schooler MP, Brockopp DY, Parshall MB, Cassidy KB, et al. Characteristics and treatment of patients with heart failure in the emergency department. J Emerg Nurs 2002;28:126-31. 4. Simon PM, Schwartzstein RM, Weiss JW, Fencl V, Teghtsoonian M, Weingberger SE. Distinguishable types of dyspnea in patients with shortness of breath. Am Rev Respir Dis 1990; 42:1009-14. 5. Elliott MW, Adams L, Cockcroft A, Macrae KD, Murphy K, Guz A. The language of breathlessness. Am Rev Respir Dis 1991; 144:826-32. 6. Mahler DA, Harver A, Lentine T, Scott JA, Beck K, Schwartzstein RM. Descriptors of breathlessness in cardiorespiratory diseases. Am J Resp Crit Care Med 1996;154:135763. 7. Schwartzstein R. The “language” of dyspnea. using verbal clues to the diagnosis. Does the quality of the discomfort point to a cardiac or pulmonary cause? J Crit Illn 1999;14: 435-41. 8. Simon PM, Schwartzstein RM, Weiss JW, Lahive K, Fencl V, Teghtsoonian M, et al. Distinguishable sensations of breathlessness induced in normal volunteers. Am Rev Respir Dis 1989;189:1021-7. 9. Wilcock A, Crosby V, Hughes A, Fielding K, Corcoran RA, Tattersfield AE. Descriptors of breathlessness in patients
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