Dyspnea self-management strategies: Use and effectiveness as reported by patients with chronic obstructive pulmonary disease

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1 Dyspnea self-management strategies: Use and effectiveness as reported by patients with chronic obstructive pulmonary disease Thomas L. Christenbery, PhD, RN PURPOSE: The purposes of this study were to (1) identify the frequency with which patients with chronic obstructive pulmonary disease (COPD) use dyspnea self-management strategies and (2) quantitatively describe the patients perceptions of self-management strategy effectiveness. METHOD: Surveys were administered to 79 patients with COPD (forced expiratory volume in 1 second 50% of predicted) in a COPD clinic. The patients were required to provide demographic data and complete dyspnea intensity and distress numeric ratings (0 10) and the Dyspnea Intervention Scale. Data were analyzed to assess the patients level of dyspnea, frequency of self-management strategy use, and perceived degree of self-management strategy effectiveness. FINDINGS: Patients in this study experienced both dyspnea intensity (M 5.52) and dyspnea distress (M 4.10). Results indicated that patients used a variety of problem-focused self-management strategies to ease their dyspnea. The most helpful strategies were associated with movement and/or pace. Breathing self-management strategies were reported as least effective unless the patient had previous experience with pulmonary rehabilitation. DISCUSSION: This study presents a beginning understanding of the perceptions of dyspnea selfmanagement strategy effectiveness and frequency of strategy use in patients with COPD. The study also emphasizes the need for clinicians to individualize self-management strategy recommendations. (Heart Lung 2005;34: ) Chronic obstructive pulmonary disease (COPD) is characterized by expiratory airflow limitation that is progressive and often associated with an abnormal inflammatory response of the lungs to noxious stimuli. 1,2 COPD has been diagnosed in approximately 12 million adults in the United States, and it is the only major cause of death that is increasing in incidence. 3,4 In fact, both the prevalence of COPD and its associated mortality are progressively increasing. 1,2,5,6 No cure and few effective treatments are available for this progressive disease. 1,7,8 Except for supplemental oxygen, treatments for COPD have not been shown to improve survival rates. 8 Likewise, no From the Vanderbilt University, School of Nursing, Nashville, Tennessee. Reprint requests: Thomas L. Christenbery, Vanderbilt University, School of Nursing, 200-B Godchaux Hall, st Ave South, Nashville, TN /$ see front matter Copyright 2005 by Mosby, Inc. doi: /j.hrtlng interventions other than smoking cessation have been shown to limit the rate of lung function decline. 1,7,8-10 Therefore, nearly all treatments are aimed at symptom relief. 7,8 Dyspnea, the sensation of labored and difficult breathing, is by far the most common and debilitating symptom associated with COPD, and therapeutic efforts to relieve the sensation of dyspnea have had limited success. 8,10-12 Because dyspnea has proven difficult to treat, individuals with COPD frequently rely on self-management strategies to control this symptom. 13,14 Self-management strategies are those interventions, whether medically prescribed or not, that individuals develop and use to relieve troublesome symptoms. 15,16 Despite reports that dyspnea self-management strategies are widely used, knowledge regarding these strategies is limited as it relates to patients with COPD. 8 For example, the frequency of dyspnea self-management strategy use over time has not been investigated and there is no information on NOVEMBER/DECEMBER 2005 HEART & LUNG

2 Christenbery Dyspnea self-management strategies effectiveness for strategies used. Gaining a better understanding of patient perceptions of self-management strategy effectiveness may assist clinicians in providing appropriate information for dyspnea relief. Consequently, this study investigated frequency of usage and perceived worth of dyspnea self-management strategies by patients with COPD. RELEVANT LITERATURE A basic tenet of health care is that patients are often capable of successfully modifying their own symptom experiences. Levin noted that self-management related to symptoms relies heavily on knowledge and skills patients already possess, such as traditional health practices or home remedies, and on self-healing capabilities. 17 Experimental studies have reported that patients with a chronic illness engage in symptom self-management behaviors for which they cited themselves as the primary sources of knowledge related to that care A central role of nursing is to build on and supplement existing self-management knowledge and capabilities that patients with COPD possess. 22 Studies investigating dyspnea self-management for individuals with COPD are scarce. A review of the literature found two exploratory studies that described self-management strategies individuals with COPD develop and use to control dyspnea. 13,14 Carrieri- Kohlman and Janson-Bjerklie used a questionnaire and structured interview to identify and compare coping strategies across three major respiratory disease categories: obstructive, restrictive, and vascular. 13 Three important features of dyspnea self-management were revealed for participants with COPD (n 27). First, individuals with COPD develop and use dyspnea self-management strategies on a regular basis. Second, there are individual differences in the way dyspnea is self-managed. Third, individuals with COPD are more likely to use strategies that promote adaptation by altering the physical problem causing dyspnea than to attempt regulation of emotions associated with the symptom. With a phenomenologic approach, Nield described self-management strategies a sample of African Americans used to control dyspnea associated with either COPD (n 15) or sarcoidosis (n 14). 14 Self-management themes derived from the data were (1) traditional medical care (eg, oxygen use), (2) self-care wisdom (eg, insights into dyspnea), (3) self-care action (eg, breathing exercises), and (4) self-care resources (eg, social support). Despite the differences in qualitative traditions and participant populations, there were striking similarities in the findings of these two studies. For example, individuals in both studies actively engaged in multiple dyspnea-reducing strategies. The self-management strategies individuals selected tended to be problem-focused as opposed to emotion-focused. Important self-management strategies for patients with COPD in each study included the practice of breathing retraining, self-medication adjustment, avoidance of aggravating factors, and positioning and movement techniques. In summary, these two studies provide a sound basis for further development of knowledge related to dyspnea self-management strategies. Actual strategies used to manage dyspnea have been identified and placed within mutually exclusive categories. Taken together, the studies suggest major categories related to the intent of self-management strategies; however, these studies did not address the effectiveness of the self-management strategies. Knowledge regarding strategy effectiveness would enable researchers to explore important relationships between dyspnea ratings and self-management strategy selection. Despite the contributions provided by these studies, more can be done to advance the state of knowledge related to dyspnea self-management for patients with COPD. The purpose of the current study was to investigate the perceptions of the adequacy of dyspnea self-management strategies in persons with COPD. The three specific aims of this study were as follows: (1) identify dyspnea self-management strategies used by individuals with moderate to severe COPD, (2) assess frequency of strategy use over a 2-week period, and (3) describe the perceived effectiveness of these strategies. METHOD Design and sample A descriptive cross-sectional design was used to achieve the exploratory aims of this study. Data were collected as part of a larger study on cognitive representation of dyspnea. Subjects in this larger study (N 120) included patients with COPD with forced expiratory volume in 1 second (FEV 1 ) ranging from 11% to 70% of predicted. For the current study inclusion criteria were as follows: (1) FEV 1 less than 50% of predicted normal, (2) diagnosis of COPD by a pulmonologist, (3) self-report of dyspnea during normal activities of daily living, (4) 35 to 80 years of age, and (5) ability to understand English. For the larger study 126 subjects were approached. Five subjects were unable to enter the study because of conflicting clinic appointments, and one subject HEART & LUNG VOL. 34, NO

3 Dyspnea self-management strategies Christenbery Table I Demographic/clinical variables (N 79) Variable Frequency Percentage Gender Male % Female % Ethnicity White % African American % Marital status Married/partnered % Single % Separated/divorced % Widowed % Number in household Live alone % Live with others % Employment status Full time % Part time % Retired % Disabled % Education High school % High school % High school graduate % College % College graduate % Graduate work % Current smoker % COPD severity Moderate (30% 49% of predicted)* % Severe ( 30% of predicted)* % COPD chronic obstructive pulmonary disease. *Global Initiative for Chronic Obstructive Lung Disease classification. was ineligible because of no report of dyspnea. All enrollment and data collection were conducted by the principal investigator over 3 months in the COPD clinics at a medical center in the southeastern United States. After seeing their pulmonologists, prospective subjects were interviewed in a private clinic room for the purpose of explaining the study and obtaining institutional review board-approved informed consent. Subjects were medically stable and had no hospital admissions 30 days before entering the study. The subjects ranged in age from 39 to 80 years (M 64.5, standard deviation [SD] 9.5, Median 67). The mean number of pack-years subjects reported smoking was 42.2 (SD 25, Median 40). The average FEV 1 of percent predicted was 31.6 (SD 9.4, Median 32). Oxygen was used by 67% (n 53) of the sample. Approximately half of the subjects (n 35, 44%) participated in pulmonary rehabilitation before entering the study. Only 9% percent of men lived by themselves, whereas 40% of the women lived alone. Sixty-four percent of men compared with 30% of women were in a relationship with a significant other. Table I summarizes the other demographic and clinical characteristics of the sample. Data collection and measures To prevent subject sensitization and burden before measuring dyspnea, data were obtained in the NOVEMBER/DECEMBER 2005 HEART & LUNG

4 Christenbery Dyspnea self-management strategies following order: (1) Dyspnea Numeric Rating Scales, (2) Dyspnea Intervention Scale (DIS), and (3) demographic/clinical data form. To ensure that subjects who could not read English would be included in the study, the investigator read the questionnaires and scales to each subject and recorded their responses. Data collection took approximately 20 minutes per subject. Dyspnea numeric rating scale. An 11-point (0 10) Numeric Rating Scale was used to measure both sensory (ie, intensity) and affective (ie, distress) dimensions of dyspnea. Dyspnea intensity is the subject s perceived severity of the symptom, whereas dyspnea distress is the discomfort or anguish dyspnea causes. Subjects were asked to rate how severe they thought their shortness of breath was and how much discomfort their dyspnea was causing them over the past 24 hours. Anchors on the numeric rating scales signified the degree of dyspnea intensity and dyspnea distress (0 no dyspnea intensity and dyspnea distress to 10 the worst possible dyspnea intensity and dyspnea distress). Validity for the Dyspnea Numeric Rating Scale has been demonstrated by correlations with dyspnea visual analog scales both before (r.80) and after ambulation (r.82) for subjects with COPD. 23 Dyspnea intervention scale. The DIS is a brief investigator-developed self-report (Table II) 2 consisting of 11 intervention items patients with COPD use to self-manage dyspnea. Items for the DIS were initially derived from the major problem-focused categories identified in the Carrieri-Kohlman and Janson-Bjerklie study, which explored self-management strategies individuals with COPD (n 27) use to decrease dyspnea. 13 A nurse and two respiratory therapists working in the COPD clinic reviewed the DIS and reported that items on the scale were frequently acknowledged by patients as strategies they used to lessen dyspnea. The DIS was then pilot tested by six patients with chronic lung disease at the clinic. These patients were not included among the 79 subjects studied. The six patients agreed that the self-management items were representative of strategies they used to manage dyspnea, thereby supporting the content validity of the scale. The patients indicated that the instrument covered the range of the self-management strategies they used. They reported that the instrument was easy to understand and simple to use. The scale measures use/non-use of the 11 dyspnea self-management strategies, the frequency with which those strategies are used, and the perceived effectiveness of the strategies. The DIS also includes a section for subjects to record unique interventions (Table II). The frequency scale consists of five responses ranging from did not use to used almost constantly (scored 1 4). The effectiveness scale consists of five responses ranging from not at all effective to very much effective (scored 1 5). Higher scores reflect greater frequency of use and greater effectiveness of the intervention. Data analysis Data were entered into SPSS 11.5 for Windows (SPSS Inc, Chicago, IL) and cleaned before analysis. Data were assessed for entry accuracy, missing data, and outliers. Descriptive statistics, including means and standard deviations, were used to summarize and evaluate the use, frequency of use, and perceived effectiveness of dyspnea self-management strategies. Descriptive statistics were also used to analyze dyspnea ratings. Because a large number of the subjects had formerly participated in pulmonary rehabilitation, a series of one-way analysis of variance tests were conducted to determine differences between participants and nonparticipants on both frequency of strategy use and effectiveness of strategies. Differences between subjects who either used or did not use select interventions were examined with t tests. Pearson product moment correlations were used to compare relationships between dyspnea ratings and demographic variables. Statistical significance was accepted at the level of P.05. RESULTS Evaluation of dyspnea By using two dyspnea numeric rating scales, subjects estimated their average dyspnea intensity and dyspnea distress over the past 24 hours (Table III). The scores indicated that, on average, subjects experienced mild to severe dyspnea intensity (M 5.52) and dyspnea distress (M 4.10) as a usual condition over the past 24 hours. Because gender and age have been cited in the literature as covariates of dyspnea, statistical analyses were conducted to ensure that gender and age were not related to dyspnea in this study. Student t test revealed no significant differences between men (n 47) and women (n 32) on either dyspnea intensity scores (t [77].33, P not significant [NS]) or dyspnea distress (t [77].32, P NS). Pearson s product moment correlation revealed no significant relationships between subjects ages in years and dyspnea intensity (r.062, P NS) or dyspnea distress (r.008, P NS). HEART & LUNG VOL. 34, NO

5 Dyspnea self-management strategies Christenbery Table II Shortness of Breath Intervention Scale (N 79) DATE: ID#: INSTRUCTIONS: I have listed 12 shortness of breath interventions below. If you did not use the intervention during the past 2 weeks, make an X in the box marked Did not use. If you did use the intervention, please circle a number that tells us how much relief the intervention provided you and how often you used the intervention. During the past 2 weeks did you use any of the following interventions to decrease your shortness of breath intensity? Did not use IF YES How OFTEN did you use the intervention? Rarely Occasionally Frequently Almost constantly IF YES How much did it help relieve your shortness of breath intensity? Not at all A little bit Somewhat Quite a bit Very much Used extra oxygen Took extra inhaler medicine Exposed self to cool air Practiced breathing exercises Moved slower Kept still Planned a decrease in activity Changed dressing/ grooming habits Changed eating habits Used assistive devices (walker, cane) Transferred activities of daily living to others Any other interventions? Self-management strategy use Percentages of subjects who reported using selfmanagement strategies over the previous 2 weeks were computed on dichotomous scores and rank ordered as summarized in Table IV. Of the 11 strategies offered to patients, those selected by more than 50% were moving slower, keeping still, using oxygen, performing breathing exercises, decreasing activities, and using cool air. Self-management strategies were used to some extent by each subject. Summing across all strategies used, subjects used from 1 to 10 strategies (M 5.72, SD 2.40, Median 6). In regard to subjects who used each strategy, moving at a slower pace (n 72, 91%) or assuming a stationary position (n 68, 86%) to relieve their dyspnea were used by most subjects. Approximately 70% (n 53) of the subjects used oxygen. Reliance on assistive devices, such as canes or walkers to assist with dyspnea, was used by fewer subjects (n 9, 11%) NOVEMBER/DECEMBER 2005 HEART & LUNG

6 Christenbery Dyspnea self-management strategies Table III Summary of Dyspnea Numeric Rating Scale Scores (n 79) Variables M (SD) Mdn Range Dyspnea intensity Dyspnea distress Dyspnea intensity Males (n 47) Females (n 32) Dyspnea distress Males (n 47) Females (n 32) Mdn median; SD standard deviation. Self-management strategy frequency of use To address how often subjects used self-management strategies over 2 weeks, mean scores on the continuous variables (1 rarely to 4 almost constantly) were calculated (Table V). For subjects who used the interventions, use of oxygen (n 53, M 3.30) and change in eating habits (n 24, M 3.20) were used with the greatest frequency. Of the 53 subjects who used oxygen, 50% reported using it almost constantly. Subjects who reported altering their eating habits to relieve dyspnea used this strategy occasionally to frequently. Although used by most subjects, the strategies of moving slower (n Table IV Frequency and percent of self-management strategy use (N 79) Variable Frequency Percent Move slower Kept still Oxygen Breathing exercise Decrease in activity Cool air Transfer ADLs Extra inhaler use Change in dressing and grooming Change eating habits Assistive devices ADL activities of daily living. 72, M 2.81) and keeping still (n 68, M 2.30) were used occasionally. Thirty percent of the subjects who used cool air (n 40) used this strategy frequently to almost constantly. Of the 35 subjects who transferred activities of daily living to others, 32% reported doing this frequently or greater. Extra inhaler use (n 32, M 2.25) and assistive devices (n 9, M 2.24) were used occasionally to frequently. Subjects with a history of participating in pulmonary rehabilitation differed significantly with respect to frequency of breathing exercise (F [1, 77] 3.82, P.05) and frequency in change of dressing/grooming habits (F [1, 77] 4.41, P.05). When the mean frequency of intervention use was compared between men and women, only two strategies showed a significant difference between the sexes. The mean frequency of dressing/grooming strategies (M 1.44) used by women differed significantly from the frequency (M.68) used by men (t 2.29, P.01). The mean frequency of change in eating habits (M.75) used by women was significantly different from the frequency (M 1.17) used by men (t 1.19, P.05). Effectiveness of self-management strategies To determine self-management strategy effectiveness (1 not at all effective to 5 very much effective ), mean scores and standard deviations were calculated for each strategy. No interventions were identified as being very much effective. All of the interventions received a mean score of greater than three, suggesting that the interventions subjects selected were at least somewhat effective. Two interventions, transferring activities of daily living (M 4.35) to others and use of oxygen (M 4.00), HEART & LUNG VOL. 34, NO

7 Dyspnea self-management strategies Christenbery Table V Frequency of self-management strategy use (N 79) Variable Number of subjects who used strategy M SD Oxygen Change eating habits Move slower Change in dressing & grooming Cool air Decrease in activity Transfer ADLs Breathing exercise Kept still Extra inhaler use Assistive devices ADL activities of daily living; SD standard deviation. were described as being quite a bit effective (Table VI). Activity changes, such as keeping still (M 3.93) and moving slower (M 3.82), were identified as being somewhat effective strategies. Fifty percent of the subjects used cool air to manage dyspnea and reported this intervention to be somewhat effective (M 3.70). The subjects (n 47) who used breathing exercise reported this strategy to be the least effective of all strategies (M 3.06). However, those subjects who participated in pulmonary rehabilitation (n 35, M 2.37) before entering the study reported a significant difference in the effectiveness of breathing exercises (F [1,77] 6.66, P.05) than those who did not attend pulmonary rehabilitation (n 12, M.80). Twenty percent of subjects taking extra doses of inhaler medication reported that it helped somewhat (M 3.59). DISCUSSION Dyspnea is a common symptom associated with COPD. Consistent with earlier studies, subjects in Table VI Effectiveness of self-management strategies Variable Number of subjects who used strategy M SD Mdn Transfer ADLs Oxygen Kept still Move slower Cool air Assistive devices Change eating habits Extra inhaler use Decrease in activity Change in dressing and grooming Breathing exercise SD standard deviation; Mdn median; ADL activities of daily living NOVEMBER/DECEMBER 2005 HEART & LUNG

8 Christenbery Dyspnea self-management strategies this study were able to use their expertise and knowledge to develop and use dyspnea self-management strategies. 13,14 In contrast with other studies, subjects in this study provided essential information concerning the frequency of use and perceived effectiveness of dyspnea self-management strategies. 13,14 Subjects in this sample tended to be better educated and to have attended pulmonary rehabilitation compared with earlier studies. There was no significant difference between men and women in the current study in report of dyspnea. This finding may explain in part why there was so little difference in the frequency of coping strategy use between men and women. Most subjects in this study used activity modification (ie, moving slower, keeping still, and decreasing activities) as a strategy to control dyspnea. Through activity modification, patients may be better able to plan their days so that they are capable of doing the things that are most important to them. Activity modification can represent a critical practice issue for clinicians. Physical inactivity is a major risk factor for multiple complications and is also a mediator in the dyspnea-inactivity-deconditioning spiral. Clinicians need to be aware of the importance of helping patients with COPD to balance appropriate amounts of activity and inactivity so that patients may be better able to control their dyspnea and preserve quality of life. For subjects who used breathing exercises there were significant differences in both frequency of use and effectiveness of breathing exercises reported by those subjects who attended pulmonary rehabilitation. Often, only one type of breathing exercise (ie, pursed lip breathing) is taught in the clinician s office. Pulmonary rehabilitation programs commonly teach and demonstrate a broader repertoire of breathing exercises. Pulmonary rehabilitation programs may provide patients with COPD the opportunity to select a breathing exercise that best addresses their dyspnea relief. In addition, staff at pulmonary rehabilitation programs may have more time to devote to helping patients conceptualize the benefits of breathing exercises. An intervention that is often recommended in the literature for relief of dyspnea in general is the use of cool air provided by a fan or air conditioner. Studies investigating the effects of cool air specifically for patients with COPD are limited. Some subjects in this study found cool air to be an effective strategy, whereas others reported that cool air was ineffective. Because dyspnea has many mechanisms, it is no surprise that not all strategies, such as cool air, work for all patients. Subjects in this study reported using inhaler medications beyond the prescribed amount. Adjusting dosage and the schedule for inhaler medication is a potentially complex level of self-medication. No studies have been found that address how often patients with COPD are self-medicating, outcomes associated with this practice, and whether it creates role conflict between patient and health care provider. It is also unknown to what degree, if any, patients with COPD are adjusting noninhaler medications (ie, steroids, diuretics) to control their dyspnea. Changing dressing and grooming habits as strategies to improve dyspnea are not commonly addressed in the literature. Because subjects report that these strategies were sometimes effective, further investigation is warranted. Although dietary management as a strategy for possible relief of dyspnea has not been studied in patients with COPD, some subjects reported this strategy to be effective. Use of assistive devices was recorded only if subjects used the device to lessen dyspnea, not to assist with some other condition, such as arthritis. In contrast with an earlier study very few subjects reported using assistive deceives as a means to relieve their dyspnea. 13 Several limitations must be considered when interpreting the results of this study. Subjects for this study were recruited from a major medical center s ambulatory clinics, which presents two concerns. First, it is unknown whether individuals with COPD who seek care at a tertiary care center use different self-management strategies than those who seek care at primary care settings. Second, it is unknown if the actual care setting, whether primary or tertiary, influences the perception of dyspnea and effectiveness of strategies. Until further studies are conducted for patients with COPD in other settings, the findings in this study may be relevant only to other patients with COPD who seek care in tertiary settings. Approximately half of the subjects attended pulmonary rehabilitation before entering the study. Participating in pulmonary rehabilitation may have provided these subjects with educational and experiential advantages regarding the use of breathing exercises. In addition, subjects who underwent pulmonary rehabilitation may have learned strategies or names for strategies, such as pursed lip breathing, that other subjects may perform subconsciously, but do not have the terms to apply to these strategies. This DIS was specifically developed for this study to measure use, frequency of use, and effectiveness of dyspnea self-management strategies. Items for HEART & LUNG VOL. 34, NO

9 Dyspnea self-management strategies Christenbery the DIS were derived from two previous qualitative studies in the published literature. Both of these studies had small sample sizes and were conducted in geographic areas dissimilar to this study. The DIS has had limited use and will require further testing. Although content validity has been established for the DIS, statistical validity has yet to be established. Statistical conclusion validity may also be a concern for this investigation. This study is the first investigation to quantify the use, frequency of use, and effectiveness of self-management strategies for patients with COPD. Because this is an early exploratory study, multiple analyses were conducted with the self-management strategy data. Therefore, some of the study s findings related to the interventions may be a result of chance rather than an accurate depiction of the patients realities. Clearly, subjects in the study who were on oxygen perceived its use as effective. Subjects who were not prescribed oxygen or could not afford it did not have this strategy for an option. It may be advisable for future studies to only include interventions that are accessible to all patients. The results of this study indicate that all subjects regularly used multiple strategies to self-manage dyspnea. These strategies were used independently by subjects at different levels of frequency and were perceived as having varying degrees of effectiveness. These results stress the importance of individualizing therapies recommended to relieve dyspnea in patients with COPD. Health care providers need to be aware that most dyspnea self-management strategies are found by patients with COPD to have limited effectiveness in relieving dyspnea. Health care providers who overstate the potential effectiveness of interventions may be inadvertently setting up the patient with COPD for feelings of disappointment and failure. REFERENCES 1. American Thoracic Society. 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