Abstract
Reducing perceptions of illness intrusiveness may improve quality of life and mental health among patients with cardiopulmonary disease. To better understand relationships between coping style, locus of control, perceived illness intrusiveness, and disease severity, we analyzed data from 227 older Veterans with chronic obstructive pulmonary disease or congestive heart failure. Regressions revealed illness intrusiveness to be associated with younger age and greater disease severity, less internal locus of control, and avoidant/emotion-focused coping. Avoidant/emotion-focused coping but not active coping mediated the relationship between illness severity and illness intrusiveness. Findings suggest that supportive psychological interventions may reduce illness intrusiveness by targeting an avoidant/emotion-focused coping style and associated behaviors.
Congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) are prevalent chronic health conditions that exert significant psychological impact (Rutledge et al., 2006). Symptoms of cardiopulmonary disease, including shortness of breath and fatigue, often interfere with both physical functioning and mental health. Limitations in mobility and the chronic fatigue characteristic of these conditions may lead patients to adopt a sedentary life style and reduce participation in hobbies, activities, and social events. Similarly, concerns about the effects of physical symptoms and shortened life span can cause anxiety and worry that interfere with daily life. All of these changes may result in increased illness intrusiveness, that is, the degree to which a patient perceives that the illness interferes with activities of daily living, including physical, mental, and social functioning (Devins et al., 1990).
Illness intrusiveness, in turn, affects emotional functioning. Patients who perceive their illness to be more intrusive report lower quality of life (Devins et al., 1990), more anxiety, and depressive symptoms (Dancey and Friend, 2008; Goudsmit et al., 2009; Paukert et al., 2009). Reducing illness intrusiveness, then, may help improve quality of life and mental health among older patients with chronic health conditions, even in the absence of improvements in physical health. In fact, illness intrusiveness is only moderately related to the severity of the physical disorder (e.g. Devins, 2010; Mullins et al., 2000). This may be because some patients are better equipped to cope with life disruptions caused by illness or develop strategies to continue pursuing hobbies and participating in social events or work. Particularly in cases where medical treatment may only manage symptoms, reducing perceived illness intrusiveness may improve quality of life and mental health.
Interventions to reduce illness intrusiveness may be informed by research indicating modifiable factors that worsen or reduce illness intrusiveness. Illness intrusiveness can be reduced by education, group psychotherapy, and self-management interventions (e.g. Coultas et al., 2005; Edworthy et al., 2003; Lorig et al., 2006), although illness intrusiveness remains high in patients with chronic diseases.
Two related psychosocial variables are coping and health-related locus of control (LOC). Active coping strategies such as seeking social support, problem solving, and positive reframing can serve as protective factors for patients with chronic illness. Active coping predicts health-related quality of life and mental health symptoms (Gibson et al., 2011; Jia et al., 2004; Myaskovsky et al., 2003). Similarly, using coping strategies for dealing with chronic disease may help older patients reduce perceptions of illness intrusiveness, whereas maladaptive, avoidant coping strategies such as reducing participation in hobbies, denial, or avoiding close others may increase perceived intrusiveness. Although few studies have examined these relationships, there is some support for a relationship between the coping strategies used by patients with chronic illness and illness intrusiveness (Paukert et al., 2009).
Another potentially related variable, health-related LOC, refers to patients’ attributions about the source of their illness and their degree of control over the progress of the disease (Wallston et al., 1994). Patients may attribute control to their own actions (internal health LOC) to luck or fate, to their doctors, or to other people in their lives. For patients living with chronic illness, an internal LOC is associated with a more active coping style and positive psychological adjustment after diagnosis (Arraras et al., 2002; Roesch and Weiner, 2001). This may be because patients who believe that they have more control over their symptoms may find them less intrusive in daily life. To the authors’ knowledge, only one study of 104 patients has examined this and found no relationship between LOC and illness intrusiveness (Paukert et al., 2009). However, this area has been understudied, and more research is needed. Illness intrusiveness is also associated with age, such that younger adults with chronic diseases report more intrusiveness, perhaps because younger patients with chronic diseases may perceive a greater discrepancy between their actual and expected health status compared with older patients (Devins, 2010).
The goal of reducing illness intrusiveness is especially important because previous research has shown that intrusiveness predicts mental health symptoms (e.g. Dancey and Friend, 2008; Paukert et al., 2009). Better understanding of interrelationships among coping, LOC, illness severity, and illness intrusiveness could help clinicians further refine interventions that help reduce illness intrusiveness in patients with chronic diseases. Such intervention may maximize patients’ disease self-management ability, minimize deleterious psychological impact, and significantly improve quality of life.
Informed by the above research, this study sought to examine how coping, LOC, and illness severity were associated with illness intrusiveness in a sample of older patients with chronic cardiopulmonary disease. Data from this study come from a large randomized controlled trial of a cognitive–behavioral intervention for older Veterans with COPD and CHF (Cully et al., 2012). We hypothesized that frequent use of active coping skills, less use of maladaptive coping skills, internal LOC, and less severe illness would be associated with lower illness intrusiveness. As coping behaviors may be able to directly minimize illness intrusiveness, we also predicted that maladaptive and adaptive coping would mediate the relationship between illness severity and intrusiveness, such that maladaptive coping would be associated with more illness intrusiveness and less adaptive coping.
Method
Participants
Participants were 227 adults with COPD or CHF from two US Veterans Affairs (VA) hospitals. Data for this study were collected in the context of an ongoing trial of brief cognitive–behavioral therapy for Veterans with COPD or CHF and clinically significant symptoms of anxiety and depression. To obtain a larger and more representative sample, this study also used data from all patients who were excluded from the larger trial for a variety of reasons (e.g. absence of clinically significant anxiety or depression) but who did have a diagnosis of COPD or CHF and initially endorsed at least one symptom of anxiety or depression on the Primary Care Evaluation of Mental Disorders Patient Questionnaire (PRIME-MD) (see below).
Measure of depression and anxiety
PRIME-MD (Spitzer et al., 1994). The PRIME-MD is a brief mental health screening tool for use with primary care patients. As a screening instrument, the PRIME-MD has good reliability and validity for detecting depression and anxiety symptoms; however, false positive rates for actual diagnoses of depression and anxiety are high (Tamburrino et al., 2009). Patients completed the PRIME-MD at screening. Patients included in this study answered “yes” to at least one of the five PRIME-MD anxiety and depression questions.
Dependent variable
The Illness Intrusiveness Rating Scale (IIRS; Devins, 2010) is a 13-item scale that measures the extent to which COPD or CHF currently intrude upon meaningful life activities. Items include “How much does your condition and/or its treatment interfere with your relationship and social activities with your family?” “How much does your condition and/or its treatment interfere with your religious or spiritual activities?” For this study, patients were directed to answer according to how much their COPD, CHF, and/or its treatment interfere with daily life. This measure includes the following domains: Physical Well-Being and Diet; Work and Finances; Marital, Sexual, and Family Relations; Recreation and Social Relationships; and Other Aspects of Life. This study examined only the total illness intrusiveness score. The IIRS has good to excellent internal consistency reliability, good test–retest reliability and construct validity (Devins, 2010). In the current sample, internal consistency was .87.
Measures of disease severity
Medical Research Council Dyspnea Score (MRC; Fletcher et al., 1959) is an interviewer-rated scale that assesses severity of shortness of breath due to COPD in ordinary activities such as walking or dressing over the past 2 weeks. Patients are classified on a scale from I (shortness of breath only with strenuous exercise) to V (breathless when dressing or unable to leave the house). To be included in the study, patients must have a score of III, IV, or V. The MRC has excellent inter-rater reliability and correlates with other measures of breathlessness and lung function (Mahler and Wells, 1988). Only patients with COPD completed this measure.
New York Heart Association (NYHA, 1964) Classification for CHF severityis an interviewer-rated scale that assesses shortness of breath and fatigue during daily activities such as eating, dressing, and walking over the past 2 weeks. Patients are classified on a severity scale from I (no impairment) to IV (severe impairment). To be included in the study, patients must have a score of II, III, or IV. The NYHA Classification has good validity as a measure of functional status of CHF patients (Bennett et al., 2002). Only patients with CHF completed this measure.
As the participants in this study included patients with COPD, CHF, or both, and the above severity measures are disease specific, a combined severity measure was created by treating the most severe MRC classification (V) as equivalent to the most severe NYHA classification (IV) and equating the less severe classifications in a similar way. This produced a variable with three potential values, representing moderate to very severe disease. For patients with both COPD and CHF, the more severe of the two values was used.
Predictor variables
Brief COPE (Carver, 1997). The Brief COPE is a 28-item scale measuring how frequently patients use various coping strategies. Patients answered based upon how they currently cope with their COPD or CHF and the physical and emotional issues that go along with this condition. A total of 14 subscales (see Table 1) contain 2 items each. Example items include “I’ve been turning to work or other activities to take my mind off things” and “I’ve been getting emotional support from others.” The COPE has acceptable internal consistency and good construct validity (Carver, 1997). Internal consistency for the 2-item subscales ranged from .48 to .83 in this sample. To address these low reliability estimates, we conducted a principle component analysis to form larger coping factors (see “Statistical analyses” section).
Descriptive statistics.
COPD: chronic obstructive pulmonary disease; CHF: congestive heart failure; SD: standard deviation; MRC: Medical Research Council Dyspnea Score; NYHA: New York Heart Association; LOC: locus of control.
Multidimensional Health LOC, Form C (Wallston et al., 1994). This scale measures LOC specific to health. Example items include “If my condition worsens, it’s a matter of fate” and “The type of help I receive from other people determines how soon my condition improves.” Subscales assess attributing the LOC to oneself (Internal), Chance, Doctors, or Other People. This scale demonstrated adequate internal consistency reliability, test–retest reliability, and construct validity (Wallston et al., 1994). In the current sample, the Internal and Chance subscales had good internal consistency (.76 and .78), whereas the Doctors and Other People subscales did not (.48 and .46). Therefore, we only analyzed the Internal and Chance subscales.
Procedures
For more detailed information on procedures, see Cully et al. (2012). Potential participants were selected from a regional VA database. The initial data extraction identified patients with International Classification of Diseases–Ninth Revision (ICD-9) diagnoses of CHF and/or COPD within the previous 2 years while excluding patients with cognitive disorders, bipolar disorder, schizophrenia, and substance and alcohol abuse/dependence. Chart reviews by research assistants (RAs) confirmed inclusion and exclusion criteria. Once potential participants were identified, opt-out letters were mailed providing information about the study and instructions on how participants could decline study participation. All patients who did not opt out were contacted by phone by a RA or the study coordinator for an initial screening.
The screening was conducted by trained RAs or study coordinator and assessed the severity of patients’ COPD/CHF, using the MRC/NYHA, as well as symptoms of anxiety and depression using the PRIME-MD. To ensure inter-rater agreement, the project coordinator met with each RA to explain the administration of the measures and how to distinguish between different levels of severity. The project coordinator supervised each RA during the first three to four administrations of the instruments and addressed discrepancies between their ratings until a high level of concordance was achieved.
To be included in the study, patients needed to be classified as a category III or higher on the MRC and as a category II or higher on the NYHA. Additionally, patients needed to endorse at least one symptom of anxiety or depression according to the PRIME-MD. Therefore, this sample is analogous to primary care patients with moderate to severe COPD or CHF and screening positive for depression or anxiety on the PRIME-MD, although when later assessed in more depth, some patients endorsed minimal or no depression or anxiety.
If patients met inclusion criteria at the screening, a baseline appointment was scheduled. Baseline assessments were also conducted over the telephone by RAs and consisted of a more in-depth assessment of self-reported physical and mental health, quality of life, and other variables. Data regarding illness intrusiveness, coping, and health-related LOC were assessed at this time point. All questionnaires were administered over the phone and data were entered into a database by the RA as the call was conducted. Data from all patients who completed baseline appointments were included in this study.
Statistical analyses
First, we examined descriptive statistics (Table 1). All data were normally distributed with the exception of several coping scales. Because the Brief COPE contains 14 subscales with only 2 items each and has poor internal consistency in some subscales and non-normality in others, we conducted an exploratory factor analysis with the 14 coping scales, using a Promax oblique rotation to allow factors to correlate. Although the results indicated the presence of four factors with eigenvalues above 1, a scree plot suggested a two-factor structure explaining 42.17 percent of the variance. The first factor (eigenvalue 4.0) appeared to represent active coping, with high loadings from scales Active Coping (.80), Planning (.74), Seeking Instrumental Social Support (.71), Positive Reframing (.68), Seeking Emotional Support (.66), Acceptance (.57), Religious Coping (.54), and Self-Distraction (.49). The second factor (eigenvalue 1.8) appeared to represent avoidant and emotion-focused coping, with high loadings from Denial (.74), Self-Blame (.74), Behavioral Disengagement (.74), Venting (.68), and a smaller loading from Planning (.46). The scales Substance Use and Humor did not load strongly (>.30) on either factor. The correlation between these factors was r = .31. These factors are similar to those found in another study regarding coping in older medically ill veterans (Paukert et al., 2009). These factor scores were used in all subsequent analyses.
We examined Pearson correlations between study variables and conducted a regression predicting illness intrusiveness, using variables that had significant univariate relationships as predictors. Next, we used a bootstrapping method (Bollen and Stine, 1990), to conduct a nonparametric statistical test of mediation. MacKinnon et al. (2002) recommend this approach rather than Baron and Kenny’s (1986) approach unless sample size is very large. The bootstrapping method repetitively samples from the available data to construct the sampling distribution and provides an unbiased confidence interval (CI) for the mediated effect. We used Hayes’ (2012) SPSS macros for examining multiple mediation, which allowed for both coping styles to be evaluated as potential mediators in one analysis. In these tests, mediation is significant if the 95 percent bias-corrected CIs for the indirect effect do not include zero (Hayes, 2012). We present data on completely standardized indirect effects as an index of effect size.
Results
Participants were 227 older adults (mean age = 66.39 years; standard deviation (SD) = 8.71 years; range = 49–91 years) with COPD or CHF recruited from two VA hospitals in the South Central United States. Most participants were male (96%), which is reflective of the olderveteran population in general. Participants were primarily non-Hispanic White (64%) or African American (24%) and married (58%). The majority (60%) had at least some collegeeducation but earned less than US$30,000 per year (61%). In all, 61 percent had COPD only, 26 percent had CHF only, and 13 percent had both diagnoses. Although all participants initially screened positive for depression or anxiety on the PRIME-MD, a more thorough assessment later indicated that 18 percent had clinically significant depression, 12 percent had clinically significant anxiety, 41 percent had both anxiety and depression, and 29 percent had neither.
Descriptive data are presented in Table 1. Mean illness intrusiveness was 51.5, higher than the values reported by patients with arthritis, organ transplants, and epilepsy, but similar to values reported by patients with schizophrenia (summarized in Devins, 2010). Correlations among study variables are presented in Table 2, and indicate that illness intrusiveness was associated with age, such that younger patients reported greater illness intrusiveness. There were no relationships with race/ethnicity, gender, or education. Illness intrusiveness was also significantly associated with greater disease severity as assessed by the MRC and NYHA. Finally, it was also associated with less internal LOC, avoidant/emotion-focused coping, and, to a lesser degree, active coping. A regression with all variables entered in the same step (Table 3) found that avoidant/emotion-focused coping, internal LOC, and disease severity all predicted illness intrusiveness. Diagnosis, entered as two dummy coded variables with values for presence or absence of COPD and CHF, did not significantly predict illness intrusiveness.
Pearson correlations among study variables.
MRC: Medical Research Council Dyspnea Score; NYHA: New York Heart Association; LOC: locus of control.
p < .05; **p < .01.
Linear regression predicting illness intrusiveness.
COPD: chronic obstructive pulmonary disease; CHF: congestive heart failure; MRC: Medical Research Council Dyspnea Score; NYHA: New York Heart Association.
p < .01.
Mediation results based on 10,000 bias-corrected bootstrapped samples indicated that only avoidant/emotion-focused coping (95% CI = [.02, .10]) mediated the relationship between illness severity as indexed by MRC/NYHA classification and illness intrusiveness, such that individuals with more severe disease tended to use more avoidant/emotion-focused coping styles and this was associated with more illness intrusiveness. The residual direct effect indicated partial mediation (p < .01). There was no significant mediation of active coping (95% CI = [−.04, .02]).
Discussion
Consistent with our hypotheses, results indicated that greater illness intrusiveness was related to younger age, greater severity of COPD/CHF symptoms, and more avoidant/emotion-focused coping. Younger age may be associated with illness intrusiveness because patients with COPD/CHF in their 50s and 60s (i.e. the “young-old”) may perceive a greater discrepancy between their actual and expected health status compared with patients in their 70s and 80s (Devins, 2010). Contrary to our hypotheses, illness intrusiveness had a small positive relationship with adaptive coping, although this may be explained by the correlation between adaptive coping and maladaptive coping.
Results also indicated negative relationships between illness intrusiveness and internal health LOC. This suggests that patients who believe that they are in control of their health outcomes have lower illness intrusiveness. Such a belief may encourage patients to participate in self-management behaviors such as exercise, diet, and managing medications that may reduce the negative disease-related health consequences. Consistent with this, patients with a stronger internal LOC also reported fewer symptoms of their condition on the MRC and NYHA.
Finally, we examined whether coping behaviors mediated the relationship between illness severity and illness intrusiveness. Consistent with our hypotheses, maladaptive, but not adaptive, coping mediated the relationship between illness severity and illness intrusiveness. This suggests that without support, patients with more severe disease are more likely to use avoidant/emotion-focused coping strategies. This may be because the symptoms of COPD and CHF overwhelm the person’s ability to engage in active coping strategies, particularly strategies that involve physical exertion, such as using hobbies to distract oneself or seeking social support. This may leave such patients more reliant upon avoidant/emotion-focused coping strategies such as self-blame or denial, and use of these strategies is then associated with greater perceptions of illness intrusiveness. This is consistent with research indicating that avoidant/emotion-focused coping strategies are generally associated with worse mental health and quality of life among physically ill patients (Gibson et al., 2011; Myaskovsky et al., 2003).
These results, if confirmed in future longitudinal studies, may have important clinical implications for the treatment of patients with chronic cardiopulmonary conditions. Namely, patients struggling with chronic diseases like COPD and CHF may benefit from interventions that encourage the substitution of active coping strategies for avoidant or emotion-focused ones. Because of the physical limitations placed upon patients by their disease, clinicians can help patients problem-solve about how to use compensatory strategies for participating in positive activities despite shortness of breath or fatigue. For example, clinicians may recommend engaging in hobbies for short periods of time while keeping a chair nearby to rest, asking significant others for help, or inviting friends to visit at home rather than attending social events outside the home. Alternately, clinicians may encourage the use of active coping strategies that do not require physical effort, such as positive reframing or seeking meaning. Given that younger age was predictive of greater illness intrusiveness, clinicians may need to tailor interventions to the needs of younger patients with COPD or CHF. For example, patients who are not yet at retirement age may have negative self-directed cognitions surrounding their inability to work and provide financially for their families, and cognitive restructuring may address this.
Limitations and future directions
Limitations of this study include the cross-sectional nature of the data, which prevents firm conclusions about the direction of the mediation relationship (Kraemer et al., 2002). For example, it may be the case that patients with more avoidant coping strategies develop more severe illnesses, or that illness intrusiveness affects disease severity. To clarify the direction of this relationship, future studies might examine the development of active and avoidant/emotion-focused coping strategies over time as a patient’s physical illness progresses. Another potential limitation is that the measures of disease severity are not based upon objective medical data. The NYHA and MRC, however, are well-established measures of severity for these disorders. Future studies might consider using objective measures of disease severity, such as forced expiratory volume for COPD.
Conclusion
In conclusion, results from this study suggest that illness intrusiveness is not solely determined by physical health status. Rather, it is influenced by a variety of potentially modifiable psychosocial variables. Supportive psychological interventions therefore may empower older patients to maximize what they can do with what they still have, and more research is needed to evaluate their efficacy.
Footnotes
Declaration of conflicting interests
The views expressed reflect those of the authors and not necessarily the policy or position of the Department of Veterans Affairs, the US government, or Baylor College of Medicine. None of these bodies played a role in study design; in the collection, analysis and interpretation of data; in the writing of the report; or in the decision to submit the article for publication.
Funding
This research was supported by the Office of Academic Affiliations VA Advanced Fellowship Program in Mental Illness Research and Treatment, the Department of Veterans Affairs South Central Mental Illness Research Education and Clinical Center (MIRECC), VA HSR&D Grant 09-088 (Principal Investigator (PI): J. Cully), and partly supported by resources and facilities of the Houston VA HSR&D Center of Excellence (HFP90-020).