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Research Reports |
PG Camp, MSc, BSc (PT), is Science Researcher, Department of Medicine, Respiratory Division, University of British Columbia, Main Floor, 2775 Heather St, Vancouver, British Columbia, Canada V5Z 3J5 (pcamp{at}unix.infoserve.net), and Physiotherapist, St Paul's Hospital, Vancouver, British Columbia, Canada. This study was completed in partial fulfillment of the requirements for Ms Camp's Master of Science degree, School of Rehabilitation Sciences, University of British Columbia. Address all correspondence to Ms Camp
J Appleton, RN, is Respiratory Nurse Clinician, Respiratory Rehabilitation Clinic, Saint Mary's Hospital, New Westminster, British Columbia, Canada
WD Reid, PhD, BMR(PT), is Associate Professor, Division of Physical Therapy, School of Rehabilitation Sciences, University of British Columbia
Submitted August 4, 1999;
Accepted May 30, 2000
 | Abstract |
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Key Words: Chronic obstructive pulmonary disease • Pulmonary rehabilitation • Quality of life
| Introduction |
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The addition of QOL questionnaires in the evaluation of pulmonary rehabilitation may broaden the scope of the evaluation and perhaps provide a more comprehensive assessment of the benefits of pulmonary rehabilitation than measures of physiological change such as exercise performance or lung function. The questionnaires commonly used in pulmonary rehabilitation evaluation have been the Quality of Well-Being Scale1 and the Chronic Respiratory Questionnaire (CRQ).2,3 These questionnaires attempt to assess the extent of disability experienced by the individual, instead of merely the severity of impairments due to the lung disease. These questionnaires can indicate how treatment affects psychosocial, spiritual, and physical domains of a person's life rather than solely evaluating physical dysfunction such as reduced exercise tolerance. Quality-of-life questionnaires, in our view, are likely to more meaningfully reflect the benefits that a person may derive from an intervention because of the domains evaluated, rather than focusing only on measures of impairment.
Quality-of-life questionnaires have been developed and tested on large groups of individuals, including some with pulmonary disease.9,10 Utilizing both quantitative and qualitative methods, known as mixed-methods research, to assess QOL changes after pulmonary rehabilitation may allow for characterization of individuals as well as a group of people with pulmonary disease. The purpose of this study was to determine the changes in QOL in individuals with COPD who have undergone a pulmonary rehabilitation program using both quantitative and qualitative research methods. Although quantitative assessments of QOL have been published previously, the unique feature of this study is the combination of both quantitative and qualitative methods in order to illustrate the nature of improvement in QOL.
| Method |
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Forty-one participants were deemed eligible for the study and agreed to participate. Twelve of these participants dropped out for a variety of reasons, including illness and family problems. Summary characteristics of the 29 subjects who completed the program are presented in Table 1. The mean FEVI for the sample was 43%, which represents a sample with severe to moderately severe lung disease.11 All participants recruited for this study were Caucasian. The attendance rate was 97%.
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The exercise component of each session was approximately 1.25 hours in duration. During this time, participants had a 15- to 20-minute warm-up, 30 minutes of aerobic exercise, and a 15-minute cool-down. The warm-up and cool-down phases consisted of stretching exercises for upper and lower extremities, thoracic mobility exercises, and light-resistance strengthening exercises (using elastic bands, handheld weights, or body positioning). In addition, low-intensity rhythmic movements of the upper and lower extremities, in synchrony with the individual's breathing pattern, were used to facilitate cardiovascular warm-up and cool-down.
The aerobic conditioning phase of the exercise sessions utilized several modalities. Lower-extremity ergometers, arm ergometers, combined upper- and lower-extremity ergometers, and treadmills were used. In addition, participants walked in the hall while distance and time walked were measured. Initial individual exercise prescriptions were based on pre-rehabilitation 6-minute walk test results, pre-rehabilitation dyspnea levels during exercise, comorbidities, and the participant's ability to sustain a given level of intensity for at least 5 to 10 minutes without stopping. Dyspnea levels were the primary variable used to determine exercise prescription, as long as the other variables of heart rate, oxygen saturation, and blood pressure were kept at a safe level. The participants were encouraged to exercise at intensities that allowed them to exercise for at least 10 minutes at a modified Borg Scale rating of 3 (moderate level of breathlessness) to 4 (somewhat hard breathing). Heart rate, oxygen saturation, dyspnea levels (using the modified Borg scale12), and exercise intensity and time were monitored for each participant on each modality, for each session. Blood pressure was monitored before and after exercise when the individual began the program. Depending on the individual's blood pressure response during exercise, the program staff would monitor blood pressure more or less frequently during subsequent sessions. Individual progression of intensity utilized the participant's rating of breathlessness. Exercise intensity was increased if the individual's modified Borg scale rating was less than 2 (easy breathing) to 3 (moderate level of breathlessness) on a particular modality. Using dyspnea targeting to guide exercise intensity is an accepted practice in pulmonary rehabilitation.13 Exercise was monitored either by a physical therapist and a respiratory nurse or by 2 respiratory nurses. In addition, participants were encouraged to exercise at least one other session per week outside of the program, at a modified Borg Scale rating of 3 to 4, for at least 30 minutes, if possible.
The education component of the respiratory rehabilitation program was delivered by a multidisciplinary team. A respiratory nurse, a physical therapist, a respiratory therapist, an occupational therapist, a social worker, and a dietitian participated in the program and led their respective educational sessions. Sessions covered anatomy and pathophysiology of COPD, medication, identifying and avoiding lung irritants and chest infections, stress management, energy conservation, nutrition, oxygen therapy, community resources, airway clearance, exercise theory, and coping with a chronic illness. Sessions were approximately 1 hour in length, were delivered in a group format, and were discussion oriented. There were 16 participants in each education group. Not all participants in the groups were subjects. Each participant received an educational manual. The manual was a 100-page, professionally printed and bound book. Each chapter in the manual corresponded to an education topic. There were fifteen 1-hour educational sessions.
Assessment of Outcome
The 2 QOL measures used in this study were the SF-36 (acute version)9 and the CRQ.10 The SF-36 was completed by the participant (ie, self-administered). It has 36 items in 8 categories (Fig. 2). Questions ask individuals to rate certain aspects of their overall health, ability to perform activities of daily living, emotional status, levels of pain, and perception of their health compared with others around them. In addition to the scores for the 8 individual categories, a physical summary component score and a mental health component summary score can be calculated (Fig. 2). These scores are derived from the 8 domains and, using a z-score transformation, yield values that can be compared with norms for the general US population.14 Ware et al15 argued that the reduction of 8 categorical scores into 2 summary scores can be achieved without a substantial loss of information.
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The second QOL questionnaire used in this study was the CRQ (also known as the Chronic Respiratory Disease Questionnaire).10 The internal consistency and test-retest reliability and the content, construct, and concurrent validity of data obtained with this questionnaire have been examined3,10,21,22 and, in our opinion, are sufficient. This interviewer-administered, disease-specific questionnaire has 20 questions covering 4 domains: dyspnea, fatigue, emotional function, and mastery (Fig. 2). The mastery domain refers to a sense of control over the disease process. Fatigue refers to tiredness or lack of energy. Each question has a 7-point Likert scale, with higher scores reflecting better physical or emotional well-being. The answers for each question related to a domain are added and then divided by the number of questions within that domain. The scores for each domain range between 1 and 7. According to Guyatt et al,23 the developers of the questionnaire, scores from the dyspnea and fatigue domains can then be combined to form the physical function component. The emotional function and mastery domains can also be combined to make the emotional function component (Fig. 2), as outlined by Guyatt et al.23 The physical function component or the emotional function component is derived by averaging the scores for the 2 domains that make up each component. In this way, these components are also expressed as a number between 1 and 7, with higher scores representing greater QOL.
Each participant underwent spirometric testing during each testing session using a Microplus handheld spirometer * according to American Thoracic Society guidelines.24 Forced expiratory volume in 1 second and forced vital capacity (FVC) were measured. According to American Thoracic Society guidelines, each participant must perform a minimum of 3 FEVI maneuvers within 5% of each other in order to meet reliability guidelines. The reliability and validity of measurements obtained with handheld spirometry have also been assessed,25,26 and we believed them to be sufficient for this study.
After the final testing session, participants were asked whether they would be willing to participate in the interview. Initially, all participants were asked. As the study progressed, an attempt was made to recruit participants for interviewing who represented the whole sample in terms of age, sex, and disease severity. We used this purposive sampling27,28 in addition to the self-selection. Therefore, the participants chosen for this phase were to some extent self-selected and to some extent selected by the researchers. In accordance with qualitative methodology,27 no attempt was made to randomly select participants or to ensure a representative sample. Each interview was conducted in the participant's home and occurred within 2 weeks of the post-rehabilitation test. All interviews were conducted by the same researcher (PGC). Participants were informed that the interview would be audiotaped and transcribed verbatim, and they were invited to review the transcript of the interview. No participant, however, requested to view a transcript. The interviewer followed a semistructured interview format, with 3 main trigger questions that focused on (1) participants' perception of the program and the changes they perceived as being due to the program, (2) the strengths and weaknesses of the program, and (3) recommendations for improving the program.
The participants were free to speak on any aspect of the pulmonary rehabilitation program, but the researcher used a list of questions to request information related to the specific topics (Tab. 2). The staff at the rehabilitation programs were not informed about which participants had agreed to do the personal interviews in order to enable each participant to speak about his or her respective program in a confidential manner.
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Although controversy exists29 as to whether the questionnaire data should be considered interval or ordinal, Domholdt29 noted that parametric statistics may be conducted on ordinal data provided that certain assumptions are met. We believe that, in our study, the use of parametric measures to analyze the questionnaire data was acceptable. Differences were considered to be significant at P<.01 as determined by the Bonferroni adjustment for multiple comparisons.29 Post hoc comparisons were made with the Tukey Honestly Significant Difference test.30
Qualitative Analysis.
The qualitative data were analyzed in accordance with established guidelines for data analysis.27,28 In summary, the interview transcripts were first reviewed by the primary author (PGC) and 2 other qualitative researchers. These researchers are faculty members at the University of British Columbia and have over 30 years of combined experience conducting qualitative research studies. During this initial review, suggestions were made as to how future interviews could be conducted in order to obtain the most complete information about the program and any changes noticed by the participants. The primary author then coded the information into major categories: how the participants were referred to the program, the perceptions they had of the program, and what changes the participants perceived to be due to the program. The data on how the participants were referred to the program and perceptions they had of the program are reported elsewhere.31 The changes the participants commented on were then further categorized into themes. These themes were verified and altered as necessary after reviewing subsequent transcripts and through discussion with the research team. Finally, a concept map was used to display the themes and to build a logical chain of information to illustrate any theoretical process underlying the themes. The coding was done without the use of any computer coding program. As stated previously, the interview participants did not want to review their own interviews or to review the analysis.
| Results |
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TopAbstractIntroductionMethodResultsDiscussionConclusions and Implications of...References |
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Qualitative Interview Results
Five women and 2 men (age 62–86 years) consented and participated in the interview portion of the study. In addition to commenting on how they were referred to the program and their opinions about pulmonary rehabilitation, the participants were able to identify several changes that they attributed to pulmonary rehabilitation. Some changes described were relatively basic in that participants learned a particular technique or fact that could be applied to their daily lives. Other changes encompassed physical, emotional, and psychological domains. When analyzing the data, a process became apparent. This process is illustrated in a concept map (Fig. 3). The concept map attempts to illustrate the movement from basic change to a more encompassing change. This process was universal among all of the interview participants.
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I learned that Ventolin takes effect in 5 minutes or so, and the other one, Atrovent, it doesn't start working for about 15 minutes.... [Now I'm] leaving a little more time between taking the puffers...I brought [my breathing] under control very shortly ... just sitting on the side of the bed, and just taking controlled breaths for a period, and just relaxing ... within 10 minutes I was okay.... [Before] I'd have been gasping and doing silly things ...
I know how to control the situations I have ... I feel now confident if I have a shortness of breath, I can control it to the point where I don't have to go [to the emergency department].
Once the participants acquired the skills and knowledge and felt they had more confidence and control over their COPD, there were several comments from the participants regarding how their outlook on the future had changed and how their overall physical and emotional well-being had improved. The following quote is from a woman with very severe COPD:
I didn't get excited about anything. I didn't think I was depressed. But I didn't feel great pleasure about anything, or great remorse about anything.... [Then] I'd been in the program ... about 3 or 4 weeks, and we were sitting watching television ... and it was particularly funny. And it just tickled my funny bone, and I started to laugh. And I couldn't stop laughing. And all of the sudden I looked at my husband, and he wasn't looking at the television. And I said, "What's the matter?" and he said, "You know this is the first time in about 3 years I've seen you laugh?" Now, it's not depression that kept me from laughing, it was fear of losing my breath.... [Now] it's wonderful! It's just marvelous. To hear a joke and laugh at it ... after years I have been able to laugh again. And enjoy.
Several interview participants had difficulty identifying precisely what aspects of the program were most beneficial. Specific education topics were not seen as necessarily more helpful than other education topics, and although the interview participants identified improvements in the energy level and physical well-being, they also felt that their improvements were due to more than just the exercise portion of the rehabilitation program.
| Discussion |
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The improvement noted in QOL, as measured by the physical function categories of the CRQ, was consistent with the changes found in previous studies of pulmonary rehabilitation using the CRQ.2,3,10,23,33–35 Comparisons of the SF-36 between this study and others are not possible due to the lack of COPD clinical trials in pulmonary rehabilitation that use the SF-36.
In addition to the improvements in physical function, the CRQ recorded changes in emotional function that are also consistent with those from previous studies.2,10,23,36 In contrast, the mental health summary of the SF-36 did not show a difference after rehabilitation. Our results illustrate, for the people with COPD we studied, the lack of responsiveness of a generic questionnaire versus a disease-specific questionnaire. When the questions that make up this component in both questionnaires were compared, the key difference between the 2 questionnaires was that the CRQ asked the individual to measure fear, panic, and anxiety when short of breath, as well as the individual's sense of control and confidence over COPD. In contrast, the SF-36 had no questions that related to dyspnea, panic, or gaining control. It is likely that the questionnaire could not detect these changes, which may account for the relative lack of responsiveness of the mental health summary component of the SF-36.
The baseline measurements of age, sex, and disease severity of this sample were similar to those of other studies assessing pulmonary rehabilitation.2,3,33–37 The mean age of this sample tended to be slightly older (69 years versus a mean age of 65 years calculated from the mean ages stated in the previous studies2,3,33,–35,37) but with similar severity of lung disease. The baseline scores for the CRQ and the SF-36 were also similar to those measured in individuals with COPD in previous studies,3,18,23,38 although the scores for the SF-36 tended to be higher (indicating a greater QOL) in this study than the norms published for COPD in the US population.14 However, the characteristics of individuals with COPD in the US population were not provided, so comparisons between this study and the US study were limited.
It is necessary that change after an intervention be clinically important as well as statistically significant. Jaeschke et al defined the minimally clinically important difference as "the smallest difference in score in the domain of interest which patients perceive as beneficial."39 The CRQ demonstrated changes that were calculated to be clinically important in both the physical function and emotional function components. Currently, there is no published information on the change required to be considered clinically significant or important for either the SF-36 physical or mental health summary scores.
The qualitative data from the personal interviews complemented and enhanced the data gained from the questionnaires. The interview participants noted increased energy level, confidence and control over COPD, improved emotional well-being, and an improved ability to perform certain physical activities. These improvements were reflected by the improvement in both components of the CRQ and in the physical summary component of the SF-36. However, neither questionnaire was capable of solely identifying all of these improvements, which reinforces recommendations from other researchers to incorporate both generic and disease-specific measures of QOL in a research study.40 In addition, we believe that only qualitative research methods such as interviewing may have had the capability to identify unique issues specific to the individual or characteristics particular to a pulmonary rehabilitation program.
In 1994, National Institutes of Health called for future research to identify the respective contributions of the components of pulmonary rehabilitation, in order to determine which aspects of rehabilitation are beneficial.1 However, research that attempts to assess the individual interventions, such as education or behavioral modifications, has shown little effect on various outcomes.8,42 Nevertheless, the American College of Chest Physicians and the American Association of Cardiovascular and Pulmonary Rehabilitation recommended that all pulmonary rehabilitation programs continue to offer exercise, educational, and psychosocial interventions.8,13 Components of pulmonary rehabilitation may be interactive and synergistic in their benefit. Clinical trials in which there is an attempt to analyze unique contributions of each of the various interventions alone may fail to find benefits because of the lack of synergistic effects. In this study, mixed-methods research may have addressed this difficulty by incorporating standardized questionnaires of QOL (encompassing both physical and emotional health assessment), as well as allowing some of the participants an opportunity to identify what aspects of the program were most helpful to them. It would appear that interventions that enhance an individual's sense of control over COPD can improve outcome. These interventions may include exercise, learning about medications, and learning breath control. As control was a predominant theme in the interview data, as well as being a unique feature of the CRQ (mastery) compared with the SF-36, it may be a necessary outcome to achieve in order for pulmonary rehabilitation to have a positive impact on QOL.
Although the CRQ showed a change in physical function after rehabilitation, this questionnaire does not address the ability of an individual to perform activities that are routinely performed in daily life, such as walking, climbing stairs, dressing, or bending. This may be a limitation of the questionnaire. The dyspnea domain of the CRQ measures the amount of dyspnea experienced while doing physical activities, but it does not clarify an individual's ability to perform physical activity. Improvements in activities of daily living due to improved fitness levels after pulmonary rehabilitation would not be measured by the CRQ and could be considered a threat to content validity in this questionnaire. In contrast, the SF-36 addressed physical ability. Thus, we believe that the use of both questionnaires in our study broadened the content validity of the quantitative aspect of the QOL assessment.
Limitations of the Study
There were some limitations to this study. These limitations include the lack of a random sample, the lack of participants from other ethnic backgrounds, the inability to determine the long-term benefits of pulmonary rehabilitation, and the lack of objective tests to corroborate the physical scores of the questionnaires. The additional problems of the participants saying what they think the researcher want to hear and of the Hawthorne effect43 (participants alter behavior because of the circumstance of being studied) were also a threat to validity of the findings. However, we contend that this threat was minimized because the researcher was separate from the pulmonary rehabilitation programs and dissociated herself from them as much as possible.
The small numbers of individuals who participated in the qualitative interviews and the fact that these individuals were essentially self-selected were 2 other limitations of this study. We cannot know whether the opinions and experiences of the 7 individuals would be shared by the overall study sample of 29 people. Increasing the number of qualitative interviews would enhance the rigor of the qualitative methodology of this study.
| Conclusions and Implications of This Study |
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Clinicians can also utilize the components in the concept map in their own pulmonary rehabilitation programs. Are clinicians aware of how control issues manifest in their rehabilitation population? Merely increasing exercise workload may not be enough to improve a person's QOL. We argue that clinicians should be aware of whether a patient believes that he or she is able to cope with COPD and that improved physical function can be an effective coping strategy. Control over COPD may also influence the long-term benefits of pulmonary rehabilitation. We wonder whether those individuals who continue to feel little control over their disease and breathing after rehabilitation will lack the confidence to continue with an unsupervised exercise program. With a better understanding of how pulmonary rehabilitation programs improve QOL, researchers and clinicians can work toward designing programs that are more effective and target the specific needs of the patients.
In addition to illustrating QOL change, this study demonstrated that the CRQ appears to be a more responsive QOL instrument for people with COPD. The broad nature of the SF-36's emotional and mental health domains resulted in the inability of the questionnaire to evaluate changes in control over breathlessness and panic or anxiety experiences. This inability likely accounted for the questionnaire's apparent lack of responsiveness.
The combination of research methods that we used yielded results that, in our opinion, could not have been obtained by either method alone. The quantitative results yielded outcomes that could be applied to pulmonary rehabilitation participants in general, whereas we believe the qualitative data expanded the analysis of QOL by providing contextual information on the process of QOL change in the smaller group of 7 individuals.
Our study provides a foundation for further identification of the processes of QOL improvement after pulmonary rehabilitation in individuals with COPD, and it provides direction for research addressing the impact of diagnosis, age, ethnicity, sex, and disease severity on QOL after rehabilitation.
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This study was approved by the Ethics Committee, University of British Columbia.
* VitalAire, 1003–7495-132 St, Surrey, British Columbia, Canada V3W 138. 
SPSS Inc, 233 S Wacker Dr, 11th Floor, Chicago, IL 60606.
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