Jamie L. Jackson

Illness knowledge moderates the influence of coping style on quality of life among women with congestive heart failure

OBJECTIVE This study evaluated the relationship of coping style with quality of life (QoL) among women with congestive heart failure (CHF), and the role of illness knowledge in this relationship. METHODS Thirty-five women with CHF completed measures of coping style (anger-in, alexithymia, and emotional expression), illness knowledge, and emotional/physical QoL. RESULTS Symptoms of depression and anxiety were positively associated with anger-in (P < .001) and alexithymia (P < .01), and were negatively correlated with emotional expression (P=.05). Furthermore, illness knowledge moderated the relationship between anger-in and depressive symptoms (P=.01), such that high anger-in individuals with greater illness knowledge displayed greater depressive symptoms. Knowledge also moderated the relationship between emotional expression and anxiety (P=.02), indicating that low emotional expression was associated with greater anxiety among those with less illness knowledge. Depressive and anxiety symptoms, anger-in, alexithymia, and emotional expression were not correlated with physical QoL. CONCLUSION Illness knowledge is associated with poorer emotional QoL among those using denial-based coping styles, but a better QoL among those avoiding communication of their emotions.

Emotional Functioning of Adolescents and Adults with Congenital Heart Disease: A Meta-Analysis

OBJECTIVE This study aimed to quantitatively compare findings of emotional functioning across studies of adolescents and adults with congenital heart disease (CHD) through meta-analysis. DESIGN The current meta-analysis included 22 studies of adolescent and adult survivors of CHD who completed measures of emotional functioning. Effect sizes were represented by Hedges g. Heterogeneity was calculated and possible moderators (i.e., lesion severity, age, study location, study quality) were examined. RESULTS Overall, adolescent and adult survivors of CHD did not differ in emotional functioning from healthy controls or normative data. However, significant heterogeneity was found, and there was a trend for degree of lesion severity to moderate emotional functioning. Further analysis of lesion severity indicated that individuals with moderate lesions reported better emotional functioning than controls/normative data. Limitations in existing literature precluded examination of patient age as a moderator. Study location and quality did not explain a significant portion of the variance in effects. CONCLUSIONS Findings suggest that differences in emotional functioning may exist across lesion severities, and individuals with moderately severe lesions are emotionally thriving. Given the diversity within CHD lesion classifications, future studies should include other indicators of disease severity, such as measures of morbidity, to determine how disease may affect emotional functioning among survivors of CHD. Furthermore, authors and journals need to ensure that research is reported in enough detail to facilitate meta-analysis, a critically important tool in answering discrepancies in the literature.

Medical factors that predict quality of life for young adults with congenital heart disease: What matters most?

BACKGROUND Identify demographic and medical status indicators that account for variability in physical and emotional health-related quality of life (QoL) among young adults with congenital heart disease (CHD) as compared to traditional lesion severity categories. METHODS Cross-sectional study of 218 young adult survivors of CHD (mean=25.7, SD=7.1 years). Participants were recruited from pediatric and adult CHD clinics at a pediatric and an adult hospital. Stepwise linear regression examined the unique contribution of demographic (age; sex; estimated income) and medical status indicators (comorbid conditions; treatment modality; ventricular function/functional capacity) on QoL compared to traditional lesion severity categories (simple; moderate; complex). RESULTS Lesion severity category accounted for a small portion of the variance in physical QoL (3%), but was not associated with emotional QoL. Lesion severity did not significantly contribute to the variability in physical QoL once other variables were entered. Having an estimated income of ≤

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

30,000, taking more than one cardiac-related medication, and having a New York Heart Association (NYHA) functional class designation>I was associated with poorer physical QoL and explained 23% of the variability. NYHA class was the only variable that explained a unique proportion of variance (7%) in emotional QoL, and having a NYHA class designation>I was associated with greater risk for poorer emotional functioning. CONCLUSIONS Findings suggested that several indicators readily available to treatment teams may provide important information about the risk for poor patient-reported outcomes of physical and emotional QoL among CHD survivors.

Perceptions of Disease-Related Stress: A Key to Better Understanding Patient-Reported Outcomes Among Survivors of Congenital Heart Disease

AIMS Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs. METHODS AND RESULTS Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics. CONCLUSIONS This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.

Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective

Background: Disease-related stressors for survivors of congenital heart disease (CHD) have been qualitatively described but not quantified nor examined in relationship to important patient-reported outcomes (PROs). Objective: The aims of this study are to (1) identify the types and degree of disease-related stress experienced by CHD survivors based on age, functional status, and sex, (2) examine differences in stress and PROs by age, functional status, and sex, and (3) determine the unique contribution of perceived stress to variability in PROs. Methods: A cross-sectional study of 173 adolescents and emerging and young adults who were recruited from both pediatric and adult CHD clinics was conducted. Participants rated the degree to which they found various aspects of CHD stressful and completed PROs of health-related quality of life and emotional distress. Differences in perceptions of stress across predictors were determined using analyses of variance and &khgr;2 analyses. The relative contribution of perceived stress predicting PROs was examined using stepwise linear regression. Results: Two items emerged as being stressful for almost half of the sample, including concerns about future health and having scars or other signs of medical procedures. Adolescents reported less perceived stress than emerging or young adults, and survivors with even mild functional limitations reported higher perceived stress than did those without any symptoms. Perceptions of stress significantly contributed to variability in PROs above and beyond other predictors and was the only variable to explain unique variance in emotional distress. Conclusions: Having even mild functional impairment may have significant deleterious consequences on PROs via increased perceptions of stress. Stress may be modifiable using cognitive behavioral therapy.

Executive Function and Internalizing Symptoms in Adolescents and Young Adults With Congenital Heart Disease: The Role of Coping

Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient‐Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH‐IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.

Depressive and Anxiety Symptoms in Adult Congenital Heart Disease: Prevalence, Health Impact and Treatment

Objective Executive functioning deficits have been documented among congenital heart disease (CHD) survivors and may contribute to emotional distress. Little research has investigated the role of coping in this association. This study examined the role of coping in accounting for the association between self-reported executive function problems and internalizing symptoms among adolescents and emerging adults (AEAs), as well as young adults (YAs) with CHD. Methods Participants included 74 AEA (Mage = 19.32 ± 3.47 years, range 15-25 years) and 98 YA CHD survivors (Mage = 32.00 ± 3.69 years, range 26-39 years), recruited from pediatric and adult outpatient cardiology clinics. Participants completed self-report measures of executive function problems, coping (primary control, secondary control, and disengagement coping), and internalizing symptoms. Lesion severity classification and functional impairment due to symptoms of heart failure were determined from medical chart review. Results Significant problems in executive function were reported by 5% of AEA and 13% of YA. Coping was not associated with executive function problems or internalizing symptoms for AEA. However, among YA, less use of adaptive coping strategies and more maladaptive coping responses was associated with both more executive function problems and internalizing symptoms. An indirect effect of executive function problems on internalizing symptoms via secondary control coping emerged for YA. Conclusions Executive function problems may disrupt the ability to use important adaptive coping skills, such as cognitive reappraisal, positive thinking, and acceptance, thereby resulting in greater emotional distress among YA CHD survivors.

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation

Over 1.4 million adults in the United States are living with congenital heart disease (CHD), which can vary widely in disease burden and risk for future cardiovascular complications. As a result, some CHD survivors may experience greater emotional distress, including symptoms of depression and anxiety. This review summarizes the developing research literature on the prevalence, health impact, as well as screening and treatment of depressive and anxiety symptoms among adult CHD survivors. Additionally, the review will highlight findings from the acquired heart disease literature, a well-studied area that can inform research and clinical care practices for CHD survivors with depressive and/or anxiety symptoms. The review concludes with considerations for depression and anxiety screening in medical settings and identifying referral resources for treatment.

Adolescents and Young Adults Living with Congenital Heart Disease: Coping, Stress Reactivity, and Emotional Functioning

OBJECTIVE First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. DESIGN Cross-sectional observational study. SETTING Twenty-four cardiology centers from 15 countries across five continents. PATIENTS Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. OUTCOME MEASURES QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. RESULTS Patients with a Fontan circulation reported lower QOL (Wald Z = -3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = -7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. CONCLUSIONS The Fontan samples more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.