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Emotion Regulation and Perceptions of Illness Coherence and Controllability on Regimen Adherence and Negative Cardiac Health Events in African American Women With Heart Failure

Wierenga, Kelly L. PhD, RN

The Journal of Cardiovascular Nursing: November/December 2017 - Volume 32 - Issue 6 - p 594–602
doi: 10.1097/JCN.0000000000000403
ARTICLES: Psychological Health
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Background: African American women with heart failure (HF) have stressors that negatively impact HF self-management adherence and heighten the occurrence of negative cardiac health events. Perceptions of illness coherence and controllability and emotion regulation are known to facilitate self-management in the face of stressors.

Objective: The aim of this study was to determine whether difficulties with emotion regulation and negative perceptions of illness coherence and controllability are detrimental to adherence and increase negative cardiac health events in this patient population.

Methods: African American women (n = 54) with HF, aged 49 to 84 years, participated in this longitudinal descriptive correlational study. Using convenience sampling, we recruited patients from hospitals and HF clinics. They completed interviews at intake and 30 days, and their medical records were reviewed at 90 days. Linear and logistic regression models were used to assess predictors of general adherence and negative cardiac health events.

Results: Of 54 patients who participated in the study, 28 experienced a negative health event during 90 days, and 57% of these events were cardiac related. The only clear predictor of these events was greater New York Heart Association functional classification (β = 1.47, P = .027). No associations were found between predictors (emotion regulation, controllability, coherence, age, education) and general adherence.

Conclusions: Emotion regulation showed a possible greater impact on negative cardiac health events than on general adherence. Perceived illness coherence showed less impact on negative cardiac health events than on general adherence.

Kelly L. Wierenga, PhD, RN Postdoctoral Fellow, Case Western Reserve University, Cleveland, Ohio.

The author has no funding or conflicts of interest to disclose.

Correspondence Kelly L. Wierenga, PhD, RN, Frances Payne Bolton School of Nursing, Case Western Reserve University, 2120 Cornell Rd, Cleveland, OH 44106 (kxa289@case.edu).

Improving adherence to diet, medications, and exercise is critical to patients in the United States with heart failure (HF), a vulnerable population of more than 5 million people.1 Poor adherence can trigger costly negative health events such as hospitalizations.2 Improving adherence has the potential to reduce the $24 billion spent annually on direct healthcare expenses,3 which are expected to triple for the next 20 years.3 As such, it is critical to identify predictors of poor adherence and negative health events, particularly in populations experiencing disparate health outcomes.

African American patients with heart failure have a greater risk of negative health events than white patients with heart failure.4–6 In addition, African Americans are highly vulnerable to social stressors, such as lower socioeconomic status, which negatively impact health.7 The combination of increased vulnerability to social stressors, poorer health outcomes, and the relative lack of empirical research conducted with African Americans across health conditions8 makes research to understand predictors of negative health events in this population critical.

Potential predictors include aversive stressors such as limited income, older age, and less education. These stressors, compounded with complex disease management, create strain beyond the scope of the disease, which may alter illness management prioritization.9 Compounding problems with adherence are depression10,11 and anxiety,10,12 which are 1.3 times more prevalent in African American women than in white women.13,14

Patients experience competing demands between management of physical, emotional, and social needs, necessitating cognitive focus. Overwhelming demands (stressors) can elicit intense emotional responses. The recognition of factors leading to HF rehospitalizations and nonadherence for African American women needs to expand beyond clinical factors to include the cognitive and emotional processing of illness.

Illness perceptions and emotion regulation are 2 components of cognitive and emotional processing that may impact outcomes in patients with heart failure. The role of illness perceptions in self-regulation and adaptive behavioral outcomes is well documented,15 whereas the mechanisms by which emotion regulation may impact health behaviors such as adherence are less clear. Emotion regulation, the experiencing, processing, and modulating of emotional responses,16 is necessary to manage the emotional stressors common to patients with heart failure. A better understanding of the role of illness perceptions and emotion regulation in adherence and negative health events is essential to making gains in improving HF self-management.

The purposes of this prospective study are to gain a better understanding of illness perceptions and emotion regulation in African American women with heart failure and to identify predictors of negative health events and adherence. We examined the hypothesis that difficulties with emotion regulation and negative perceptions of illness coherence and controllability are detrimental to HF self-management regimen adherence and increase negative cardiac health events (visits to emergency departments, hospitalizations, and death for cardiac reasons) in African American women with heart failure.

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Methods

A prospective descriptive correlational design was used to complete this study.

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Sample Selection

The target sample size of 60 participants was determined based on project duration and resources. With this sample size, power was sufficient (≥0.80) to detect a small effect size expressed as Cohen f2 of 0.14.17 This effect size corresponds to partial R2 of 0.12 for the explanatory variables of interest. The partial R2 will provide information on the marginal contributions of predictor variables consistent with pilot study research.

Participants were included if they were (1) African American female patients who were 45 years or older; (2) given a diagnosis of heart failure; (3) on physician-prescribed dietary, exercise, and medication regimens; and (4) able to understand both written and spoken English. Patients were excluded if (1) they had documented psychiatric (bipolar disorder, schizophrenia, or drug abuse) or cognitive disabilities that would limit their ability to answer survey questions or (2) they were discharged to a long-term care facility or palliative care where independent decisions to adhere to a self-management regimen would be diminished.

Enrolment occurred between September 2014 and July 2015. All interviews and medical record reviews were completed by September 2015.

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Protection of Human Subjects

Institutional and collaborative hospital review boards approved the study and all protocols. Participants completed an informed consent for the study and received a $20 gift card for completing the interviews.

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Protocol

Potential participants were identified by care providers and referred to study recruiters. Additional information about the study was given to interested potential participants by the recruiters. Interested participants completed a screening checklist and, if eligible, obtained informed consent with assistance from the recruiters. Baseline phone interviews lasting approximately 60 minutes were then completed, with a subsequent 30-day follow-up phone interview and 90-day medical record review. Because of limited resources, single time points were chosen for follow-up to maximize participant retention for the phone interview and to identify negative health events for a longer period for the medical record review. Adherence and negative health events were identified at the 30-day interview, with verification of events within the 90-day medical record review.

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Outcomes and Measures

Illness Perceptions

The revised Illness Perception Questionnaire (IPQ-R) was used to measure perceptions of illness coherence and controllability. Lower scores on the personal and treatment control subscale indicate a lack of perceived illness controllability, and lower scores on the illness coherence subscale suggest lowered usefulness of the illness representation or that the illness does not make sense.

Each of the items from the IPQ-R subscales are scored on a 5-point Likert-style scale, from “strongly disagree” to “strongly agree.” In previous validation testing, each of these subscales demonstrated good internal reliability (Cronbach α > .79), as well as discriminant and predictive validity.18 Exploratory factor analysis was conducted for this sample, indicating that items from the personal and treatment controllability were converging on a single factor. As such, these items were combined into a single subscale. Two items were removed that exhibited low item-rest correlations (<0.30). The 9 remaining items had a final subscale Cronbach α of .80. Items from the coherence subscale demonstrated convergence on a single factor, with good item-rest correlations (>0.30) and a Cronbach α of .80.

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Emotion Regulation

The Difficulties in Emotion Regulation Scale (DERS) was used to measure emotion regulation at intake (Cronbach α = .93).19 All DERS items are measured on a Likert scale with a range of 1 to 5. Summed items create an overall global score.19 Exploratory factor analysis in this study sample demonstrated a lack of unidimensionality of the 36-item scale. Items were removed based on lack of commonalities, as well as their factor loadings on the extracted factors, leaving 18 items. Reliability analysis revealed that no remaining items demonstrated low item-rest correlations (<0.35). The abbreviated scale had a mean interitem correlation of 0.42 and good reliability with a Cronbach α of .94.

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Adherence

Self-reported adherence was measured using the Medical Outcomes Study Specific Adherence Scale (MOS-SAS) at follow-up for heart disease.20 The MOS-SAS measures both general adherence and cardiac disease–specific adherence.20–22 One adherence question related to each particular behavior was selected from the specific adherence MOS-SAS questions (exercise, medication, and diet), and these were analyzed on a 6-point Likert scale to determine adherence since enrollment.

The 8-item MOS-SAS had less than optimal internal reliability in this sample, with a Cronbach α of .64. As use of this measure in a similar population was not identified, further analysis of the scale in this sample was needed. Exploratory analysis identified that only the general adherence questions loaded on a single factor, and one of these items had a low item-rest correlation. After the removal of problematic items, the 4 remaining general adherence items converged on a single factor, with an item-rest correlation of greater than 0.30 and a Cronbach α of .70. Single responses to diet, medications, and exercise adherence were retained for descriptive purposes only.

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Negative Cardiac Health Events

Use of healthcare resources, type of healthcare resources used, and time to the first unscheduled care event or death were examined. Negative health events for patients with heart failure were defined as death, hospitalizations, or emergency department or urgent care visits. Because of the difficulty in isolating cardiovascular events from heart failure events, all negative cardiac health events were included. For the purposes of this study, the occurrence of a negative cardiac health event within 90 days was examined with medical record review as the primary source of this information. Verification of events within and outside the primary facilities was completed for the first 30 days at the follow-up phone call. Events occurring between 30 and 90 days only include those events from the participating health systems.

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Other Variables

Several other variables were measured, including sociodemographic and clinical factors such as age, income, education, New York Heart Association (NYHA) functional classification, left ventricular ejection fraction, and comorbidities (measured with the Index of Coexistent Diseases).23

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Statistical Analyses

All data analyses were performed using SPSS 23 and STATA 14.24,25 Years of education and income were evaluated as single numerical values. Because only a small number of participants were categorized as NYHA class I or IV, this categorical variable was simplified to be either class I or II or class III or IV.

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Results

Participant Characteristics

A total of 58 African American women who were given a diagnosis of heart failure were recruited from inpatient (n = 38, 65%) and heart failure clinic (n = 20, 35%) sites. Of those participants, 54 completed the intake interviews, and 51 completed follow-up interviews and had complete medical record reviews. Those patients lost to follow-up occurred when the participant did not answer the contact phone number (n = 4) or the participant changed their mind after starting data collection (n = 2) or because of death (n = 1). No differences were identified between completers and noncompleters. Table 1 presents the demographic and health characteristics of the study sample.

TABLE 1

TABLE 1

Study participants varied in age from 49 to 84 years. No differences were noted in the demographics of the study participants between those who were recruited in the hospital and those who were recruited in clinics, except for disease severity (Table 1). Clinically, the participants varied in symptom severity, with 32 in NYHA functional classification I or II (55%) and 26 in NYHA functional classification III or IV (45%). Hospital-recruited participants had greater NYHA functional classifications (2.7 ± 0.8) than those recruited in clinics (1.9 ± 0.6). Documented ejection fractions indicated that 21 (39%) had a left ventricular ejection fraction of greater than 40% or physician-indicated preserved systolic function, whereas 33 (57%) had nonpreserved systolic function. Half of the participants completed some college (n = 29), and most were of lower socioeconomic status, with 82% (n = 42) reporting household incomes of less than $30 000. Overall, multiple comorbid conditions were common, with the participants reporting a range of 4 to 12 illnesses, with a mean of 4.8 ± 2.0 comorbid conditions. The most frequently self-reported comorbid illnesses were hypertension (n = 49, 91%), arthritis (n = 41, 76%), arrhythmias (n = 36, 67%), diabetes (n = 29, 54%), and respiratory disease (n = 25, 46%).

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Negative Cardiac Health Events

Negative health events were relatively common in this group (n = 28, 48%), with first events identified as 15 hospital admissions, 6 emergency department visits, and 7 urgent visits to healthcare providers (Table 2). The outcome was determined based on the first negative health event; however, some participants experienced multiple events. Participant days to negative healthcare events varied during the 90-day follow-up period, with a mean of 40.9 ± 25.6 days and a range of 4 to 92 days.

TABLE 2

TABLE 2

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Adherence

Overall, the mean scores of 3.8 ± 1.0 on the 5-point MOS-SAS suggest positive adherence to HF regimen self-management behaviors (Table 3). With the single-item questions, participants reported the lowest adherence to exercise (1.9 ± 1.6) on a 1 to 5 scale and the highest adherence to diet (4.1 ± 1.4) and medications (4.9 ± 0.7). Overall, patients perceived themselves as generally adherent, yet negative health events were common.

TABLE 3

TABLE 3

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Emotion Regulation

Mean item responses from the abbreviated DERS items were calculated to create a 1 to 5 scale. On the 18-item abbreviated DERS, participants reported mean difficulty with emotion regulation as 1.8 ± 0.8 (Table 3). The range of these mean scores (1–4.8) indicated that participants responding to this scale varied from having low to high difficulties with emotion regulation. The response patterns were skewed toward fewer difficulties with emotion regulation.

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Illness Perceptions

The mean score of illness coherence was 3.2 ± 0.8, with a range of mean scores from 1.6 to 5 (Table 3). The illness coherence subscale had an almost symmetrical distribution centered on the neutral response. The adapted illness controllability subscale had a mean score of 3.9 ± 0.5, with a range of 2.1 to 5. The responses on the adapted illness controllability subscale were not as symmetrical and were skewed toward greater perceived controllability. Participants responding to each of these subscales varied from very negative to highly positive perceptions of illness coherence and controllability.

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Predictors and Outcomes

Two models were used to test the relationships between emotion regulation and illness perceptions with the outcomes of adherence and negative cardiac health events. Both models used a subset of the predictor variables (age, education, and NYHA functional classification). To examine the outcome variable of adherence, a linear regression model was used. Because the second outcome variable was dichotomous (an event either occurred or did not), a logistic model was used.

For the linear regression model, the Breusch-Pagan/Cook-Weisberg test for heteroskedasticity was significant, indicating that it was necessary to test the relationships using robust standard errors.26 In the first linear regression model, age, education, IPQ-R adapted illness controllability, IPQ-R illness coherence, and the abbreviated Difficulties in Emotion Regulation Scale were the predictor variables for the adherence outcome. This model was not statistically significant (P = .434) with no significant single relationships (Table 4).

TABLE 4

TABLE 4

In the logistic regression model predicting the odds of a first emergency use of healthcare services, the predictors were age, education, illness severity using the NYHA functional classification, IPQ-R adapted illness controllability, IPQ-R illness coherence, and the abbreviated Difficulties in Emotion Regulation Scale. The findings were nonsignificant for predicting the use of emergent healthcare services (P = .140). There were limited significant single relationships between the predictor variables and healthcare use (Table 5).

TABLE 5

TABLE 5

A single significant relationship existed within this second model. As shown in Table 5, NYHA functional classification was found to be associated with the use of emergent healthcare services for cardiac events (β = 1.47, P = .027). Although no clear relationships were found in regard to illness perceptions or emotion regulation and the outcomes of adherence and use of healthcare services for cardiac events, results of this study indicate that these concepts warrant further study.

Of potential importance, poor illness coherence, as shown in Table 4 (β = −0.32, P = .080), may have a negative effect on general adherence. Furthermore, in addition to NYHA functional classification contributing to the odds of a negative health event, difficulties with emotion regulation, as shown by the Difficulties in Emotion Regulation Scale in Table 5 (β = 0.80, P = .069), may also be a contributor.

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Summary of Findings

Although the results of this study demonstrated few significant relationships, several key results are critical to further discussion. The first is that these participants experienced greater negative health events than anticipated. Of the 54 participants, 28 experienced a negative health event for any reason during the 90 days, 57% of these being cardiac related. The only clear predictor of these events was greater NYHA functional classification (β = 1.47, P = .027). No associations were found between predictors (emotion regulation, controllability, coherence, age, education) and general adherence. Despite the lack of significance with illness perceptions and emotion regulation, the individual impact on the outcomes is intriguing. Emotion regulation (although not significant in these models) showed a possible greater impact on negative cardiac health events (β = 0.80, P = .069) than on general adherence (β = −0.10, P = .594). Alternatively, perceived illness coherence showed less impact on negative cardiac health events (β = −0.27, P = .507) than on general adherence (β = −0.32, P = .080).

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Discussion

The patients in this study were younger, had lower incomes, and experienced heightened negative cardiac health events. This sample reported many perceived strengths such as less difficulty with emotion regulation, perceptions that their illness was more controllable, and overall good general adherence. A variety of factors are associated with negative health events, and it is recognized that population groups, such as African Americans, are at a greater risk for poor heart failure outcomes.5

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Adherence

The patients in the current study self-reported overall strong perceived adherence to their treatment regimen. In other studies, general non-adherence in patients with heart failure was reported at 16%,27 and a mean adherence of 50.3 on a 0 to 100 scale was reported in another.28 General adherence instruments can be useful in screening patients for perceived issues with adherence but may not clearly identify all adherence issues. The high levels of adherence reported by participants in this study raise a question about whether the participants were overreporting or whether perhaps this group is an example of higher adherence. Results from this study were unable to determine predictors of adherence.

This study identified a lack of significance between illness coherence and adherence, similar to results from a previous systematic review.29 This information suggests that perceptions of understanding one's illness may not be necessary for adherent behaviors to occur. It is plausible that a patient with limited illness knowledge who newly received a diagnosis may be very adherent, whereas someone living with the illness for years may become more lax in adherence if the illness is stable. Furthermore, patients may become more adherent because of changes in the acuity of the illness. Beyond the trajectory of the disease, it is possible that group differences may contribute to high levels of adherence. This idea is supported by results of another project in which African American participants reported that cultural beliefs were shown to support medication adherence.30 It is plausible that the cultural environment of these participants supports general adherence and contributed to the high levels of reported adherence.

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Negative Cardiac Health Events

Compared with studies with similar samples in terms of age and disease severity, patients in this study experienced more negative health events within a shorter follow-up period.31,32 These differences in frequency of negative health events could be related to differences in sociodemographic factors (African American and poor) or other factors such as healthcare access.

More than half of the patients experiencing a negative health event in this study were hospitalized (n = 15, 54%), and several of these hospitalized patients died (n = 5, 18%). This would suggest that the negative health events were severe in nature. The use of healthcare services for cardiac reasons was found to be significantly associated with the patients' NYHA functional classifications in this study. In addition, the causes for most healthcare use and all deaths were related to cardiac reasons. It is apparent that a patient's cardiovascular health is of pivotal importance in preventing emergent negative health events. Other factors such as hospital recruitment and sociodemographic indices may also account for the severity of health events.

Participants in this study may have had lower socioeconomic statuses than those reported in other heart failure research.6 It is known that lowered access to financial resources is a predictor of poorer outcomes, such as increased mortality; however, it is unclear why this association exists.33 Lower income levels of African American patients with heart failure may partially explain the presence of greater negative health events; however, other factors are also likely contributors.

From the common sense model perspective, relationships exist between emotional processing, coping, and outcomes such as negative health events.18 Lee et al34 found that psychological distress negatively impacts health events. Emotionally distressed individuals may have difficulties regulating emotions and may increase their use of healthcare services.11,35–37 Furthermore, emotional processing traits have been implicated with specific disease types, such as cardiac conditions.38,39

Because mental distress increases the risk for negative health events such as hospitalization, it is plausible that coincident emotion regulation impacts the use of healthcare services.11,35–37 The combination of demands, whether emotional or cognitive, impacts health. It is essential that cognitive resources are both conserved and restored to respond to illness stressors.16,40

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Other Considerations

Other considerations in terms of interpreting study findings include patients' use of informal care and potential measurement issues associated with using a medical record to determine negative health events. Patients may have sought care in other settings such as alternate clinics, emergency departments, or hospitals or received informal care from family members or other individuals in the community. In older African American patients, care is often provided by families rather than by formal care providers.41 Further exploration is necessary to determine whether perceptions of illness coherence impact negative health events in African American women with heart failure.

Studies examining relationships between illness perceptions and negative health events are uncommon in African American women with heart failure. Subjective perceptions of health are recognized to impact perceived control more so than health.42 Further research is needed to examine relationships between illness perceptions and negative health events with larger sample sizes and with longitudinal designs.

Recognizing the potential impact of emotion regulation on healthcare use and outcomes in vulnerable groups could improve patient care. This is particularly relevant to patients who may have the most difficulty with emotion regulation, such as those who are younger and who are experiencing greater perceived stress. With heightened information relative to the impact of emotion regulation on negative health events, targeted cognitive-behavioral and/or mind-body interventions to improve adherence to medications, diet, and exercise can be developed. For example, yoga has been found to have a positive impact on emotion regulation43 while successfully engaging patients with heart failure in physical activity.44 Hypothetically, interventions that enhance adherence to heart failure regimens and improve psychological well-being may also simultaneously decrease negative health events.

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Limitations

This study was an initial exploration of emotion regulation and illness perceptions in African American women with heart failure. The small sample size limited potential effect sizes while also potentially limiting statistical significance. The variable length of illness duration made it impossible to determine whether a patient's psychological distress was associated with a new diagnosis of heart failure or the impact of advancing disease. In addition, the limited follow-up period made finding significance in relation to negative health events difficult. Finally, measures were self-reported, and the identification of instruments validated in this population was a challenge. Further exploration of appropriate measures is necessary to determine optimal instruments for use with African American women with heart failure.

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Implications for Practice and Research

Despite a lack of significant relationships, implications regarding study findings were identified. Because a chronic illness such as heart failure impacts both cognitive and emotional processing of health-related information, consideration of both illness perceptions and emotion regulation may help support patients. Carefully constructed care plans should be collaboratively created with the patients and individualized to their needs, which may include adaptations based on social, cognitive, and emotional differences.

Research on African American women with heart failure and other chronic conditions must continue to identify sources and solutions to the health disparities in outcomes of these patients. The development of interventions that may improve emotion regulation in populations of African American women and those with chronic illnesses may be of value for decreasing negative health outcomes.

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What's New and Important

  • It is unclear if illness coherence effects general adherence.
  • Greater difficulties with emotion regulation may contribute to the odds of a negative health event.
  • There remain unexplained predictors contributing to the elevated number of negative health events noted in African American women with heart failure.
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Keywords:

adaptation; emotions; health behavior; heart failure; perception; psychological

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