Phenotypes of adults with congenital heart disease around the globe: a cluster analysis.

OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL). METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL. RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities. CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.

Smoking among adult congenital heart disease survivors in the United States: Prevalence and relationship with illness perceptions.

The relationship between smoking and illness perceptions among congenital heart disease (CHD) survivors is unknown. The primary aims of the present study were to compare the smoking prevalence among CHD survivors to a nationally representative U.S. sample and examine the relationship between smoking and illness perceptions. CHD survivors (N = 744) from six U.S. sites participated in the study. The smoking prevalence among CHD survivors (9.3%) was lower than the general population (15.3%). However, 23.3% of CHD survivors with severe functional limitations smoked. Smoking prevalence differed by U.S. region, with a greater proportion of those attending CHD care in the Midwest reporting smoking (11.8%). The illness perception dimensions of Concern and Emotional Response were independently associated with smoking. Differences in illness perceptions enhance our understanding of smoking among CHD survivors and may guide interventions promoting positive health behaviors. The protocol for the study from which the present analyses were conducted was recorded at ClinicalTrials.gov: NCT02150603.

Healthcare system inputs and patient-reported outcomes: a study in adults with congenital heart defect from 15 countries.

BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease. METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.

The Role of Disease Conviction: Exploring Its Effects on Chest Pain and Anxiety-Related Models of Non-cardiac Chest Pain.

The aim of this study was to investigate the role of disease conviction in the chest pain and life interference of patients with non-cardiac chest pain (NCCP), after controlling for anxiety sensitivity and body vigilance. While all three psychological constructs are theoretically implicated and empirically associated with the experience of NCCP, no research has examined the influence of disease conviction in the context of other relevant constructs. The sample included 229 participants with NCCP who were recruited after a medical evaluation failed to elicit an organic explanation for their chest pain. Hierarchical regression analyses revealed that while anxiety sensitivity significantly predicted chest pain severity and interference, only body vigilance contributed significant additional variance to chest pain severity, and only disease conviction contributed significant additional variance to chest pain interference. While anxiety sensitivity, body vigilance, and disease conviction all appear to affect those with NCCP, it seems that their impact is manifest in different domains (i.e., pain perception vs. psychosocial impairment).

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

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.

SECOND-STAGE TREATMENTS FOR RELATIVE NONRESPONDERS TO COGNITIVE BEHAVIORAL THERAPY (CBT) FOR PANIC DISORDER WITH OR WITHOUT AGORAPHOBIA-CONTINUED CBT VERSUS SSRI: A RANDOMIZED CONTROLLED TRIAL.

BACKGROUND: Cognitive behavioral therapy (CBT) and pharmacotherapy are efficacious for the short-term treatment of panic disorder. Less is known about the efficacy of these therapies for individuals who do not respond fully to short-term CBT. METHOD: The current trial is a second-step stratified randomized design comparing two treatment conditions-selective serotonin reuptake inhibitor (SSRI; paroxetine or citalopram; n = 34) and continued CBT (n = 24)-in a sample of individuals classified as treatment nonresponders to an initial course of CBT for panic disorder. Participants were randomized to 3 months of treatment and then followed for an additional 9 months. Only treatment responders after 3 months were maintained on the treatment until 12-month follow-up. Data analysis focused on panic disorder symptoms and achievement of response status across the first 3 months of treatment. Final follow-up data are presented descriptively. RESULTS: Participants in the SSRI condition showed significantly lower panic disorder symptoms as compared to continued CBT at 3 months. Results were similar when excluding individuals with comorbid major depression or analyzing the entire intent-to-treat sample. Group differences disappeared during 9-month naturalistic follow-up, although there was significant attrition and use of nonstudy therapies in both arms. CONCLUSIONS: These data suggest greater improvement in panic disorder symptoms when switching to SSRI after failure to fully respond to an initial course of CBT. Future studies should further investigate relapse following treatment discontinuation for nonresponders who became responders. Clinicaltrials.gov Identifier: NCT00000368; https://clinicaltrials.gov/show/NCT00000368.

Does cognitive avoidance mediate the relation of anxiety and binge eating?

PURPOSE: Theory suggests that binge eating symptoms may develop in an attempt to avoid distressing states that arise in the context of negative affect. In light of its theoretical significance, including the "escape from awareness" model of binge eating, surprisingly few empirical evaluations have examined the empirical evidence for this variable in relation to anxiety and binge eating symptoms. In addition, although it is understood that anxiety is more prevalent among women than men, empirical investigations of gender differences in cognitive avoidance in binge eating are thus far absent from the published literature. METHODS: Participants (N = 436) were recruited from diverse geographic regions across the United States to take part in an online study. Cognitive avoidance, anxiety, and binge eating measures were collected. RESULTS: Cognitive avoidance partially mediated the relation between anxiety and binge eating in the full sample; however, results differed across genders. Specifically, cognitive avoidance was a mediator for women, but not for men. CONCLUSIONS: Findings support the "escape from awareness" model of binge eating among women, and suggest that targeting cognitive avoidance in binge eating treatment may be a promising clinical avenue. Future research may benefit from exploring the broader construct of experiential avoidance to determine if the gender differences in cognitive avoidance observed in this study are indicative of a larger pattern of avoidance behavior, and if factors other than cognitive avoidance may have greater relevance for men.

Illness perceptions, negative emotions, and pain in patients with noncardiac chest pain.

Illness-specific cognitions are associated with outcomes in numerous health conditions, however, little is known about their role in noncardiac chest pain (NCCP). NCCP is prevalent, impairing, and associated with elevated health care utilization. Our objective was to investigate the relations between illness perceptions, emotion, and pain in a sample of 196 adult patients diagnosed with NCCP. We found that negative illness perceptions were associated with greater anxiety, depression, chest pain, and pain-related life interference while controlling for the effects of demographic and pain-related variables. These results expand current NCCP theory and may inform future treatment development.

Quality of life in patients with non-CAD chest pain: associations to fear of pain and psychiatric disorder severity.

Chest pain in the absence of identified cardiac cause, or non-cardiac chest pain (NCCP), is a common condition that may result in impaired quality of life. Theories of NCCP put forward that patients who react to cardiopulmonary sensations with fear may avoid activities that elicit cardiac sensations. Co-morbid psychiatric disorders, which are prevalent in this population, may predispose individuals to be more vigilant to physiological sensations, including cardiac-related symptoms. The daily impact of avoiding cardiopulmonary cues may limit quality of life. This study examined psychiatric disorders, fear of pain, and quality of life in 30 non-coronary artery disease (CAD) chest pain patients. Psychiatric disorder severity was independently associated with mental health related quality of life and fear of pain was independently associated with physical health related quality of life. This research adds understanding to contributory factors to impaired quality of life among patients with non-CAD chest pain.

Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS.

The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40-59 years and 18-39 years. Adjusted for demographic and medical characteristics, patients ≥60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40-59 years. Registration: ClinicalTrials.gov NCT02150603.

Noncardiac chest pain in children and adolescents: a biopsychosocial conceptualization.

Pediatric NCCP may be characterized by recurrent pain accompanied by emotional distress and functional impairment. This paper reviews and critiques literature on pediatric noncardiac chest pain (NCCP) and introduces a theoretical conceptualization to guide future study of NCCP in children and adolescents. A developmentally informed biopsychosocial conceptualization of NCCP etiology is proposed based on a synthesis of empirical evidence and clinical observations of pediatric NCCP within the context of relevant findings from the broader pediatric pain and anxiety literature. Multiple factors from biological, psychological, social, familial, and developmental domains are potentially relevant to the etiology of this ailment. This article concludes with directions for future research and clinical implications.

Perceived sleep quality mediates the relationship between posttraumatic stress and somatic symptoms.

OBJECTIVE: Posttraumatic stress symptoms (PTSS) have been associated with increased somatic symptom expression. Sleep concerns have been associated with PTSS and somatic symptoms. Previous research suggests that sleep affects multiple domains of functioning including comorbid psychological and physical health concerns. The current study examines whether perceived sleep quality or sleep efficiency/duration may be mediating the relationship between PTSS and somatic symptoms in a trauma-exposed sample. METHOD: The sample consisted of 864 students, recruited from a large Midwestern university and compensated with research participation credit. Data were collected online over approximately 39 months (October 2015 through January 2019), and the pertinent scales examined in this study included Pittsburgh Sleep Quality Index, Posttraumatic Stress Disorder Checklist for Diagnostic and Statistical Manual of Mental Disorders, fifth edition, and Screening for Somatoform Symptoms-7. RESULTS: Of the 864 students, 668 participants identified as female (77.3%) and 540 identified as non-Hispanic White (62.5%), with an overall average age of 23.14 years (SD = 6.64). Mediation analyses indicated that the overall model examining global sleep quality complaints as a mechanism of the relationship between PTSS and somatic symptoms was significant, F(3, 860) = 193.97, R² = .40, p < .001, and that perceived sleep quality was found to be the only significant specific mediator (indirect effect = .21). Although females reported greater somatic severity, PTSS, and sleep concerns, models were significant, even after examining the influence of gender. CONCLUSIONS: Global sleep complaints are associated with both PTSS and somatic symptoms. Perceived sleep quality specifically mediated the relationship between PTSS and somatic symptoms, highlighting a potential intervention for improving physical health consequences in trauma-exposed individuals. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.

Background Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. Methods and Results As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT02150603.

Augmenting antidepressant medication with modular CBT for geriatric generalized anxiety disorder: a pilot study.

OBJECTIVE: Generalized anxiety disorder (GAD) is a prevalent psychiatric condition in older adults with deleterious effects on health and cognition. Although selective serotonin reuptake inhibitor (SSRI) medications have some efficacy as acute treatments for geriatric GAD, incomplete response is the most common outcome of monotherapy. We therefore developed a novel sequential treatment strategy, using personalized, modular cognitive-behavioral therapy (mCBT) to augment SSRI medication. METHOD: In an open label pilot study (N = 10), subjects received a sequenced trial of 12 weeks of escitalopram followed by 16 weeks of escitalopram augmented with mCBT. We also examined the maintenance effects of mCBT over a 28-week follow-up period following drug discontinuation and termination of psychotherapy. RESULTS: Results suggest that (1) adding mCBT to escitalopram significantly reduced anxiety symptoms and pathological worry, resulting in full remission for most patients and (2) some patients maintained response after all treatments were withdrawn. CONCLUSION: Findings suggest that mCBT may be an effective augmentation strategy when added to SSRI medication and provide limited support for the long-term benefit of mCBT after discontinuation of pharmacotherapy.

Coping with childhood maltreatment: Avoidance and eating disorder symptoms.

Childhood maltreatment is associated with eating disorder symptoms; however, the nature of this association is unclear. We found those who experienced childhood maltreatment had higher avoidant coping and eating disorder symptoms. We also found an additive effect for maltreatment, such that with more types of maltreatment experienced, avoidant coping and eating disorder symptoms were greater. We also found evidence of an indirect effect such that childhood maltreatment was related to eating disorder symptoms through avoidant coping. Future research is needed to better understand factors that may promote development of adaptive coping patterns and prevention of eating disorder symptoms.

Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life.

BACKGROUND: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. AIMS: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. METHODS: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13-91) and QoL was assessed by a linear analog scale (range 0-100). RESULTS: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. CONCLUSION: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance.

Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS).

In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.

Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study.

BACKGROUND: Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD. OBJECTIVE: The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations. METHODS: Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias. RESULTS: A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions. CONCLUSION: Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.

Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries.

BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. RESULTS: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.

Attrition in a multicenter clinical trial for panic disorder.

This study examined attrition in a multisite clinical trial for panic disorder. Of 379 eligible patients, 19 refused treatment (5% Refusal Rate), 104 discontinued treatment prematurely (19% Dropout Rate) or were withdrawn by the investigators (8% Withdrawal Rate), and 256 completed the treatment (68% Completion Rate). Logistic regression was used to examine 5 domains theorized to be related to attrition (e.g., diagnostic severity, treatment factors). Few variables were associated with increased odds of attrition at padj < 0.004. Younger age was the only independent predictor of attrition in the demographic factor model. Diagnostic severity and comorbidity, panic disorder symptom severity, treatment factors, and therapist factors were unrelated to study attrition. Patient dropout was highest after treatment sessions that targeted interoceptive and situational exposure exercises. Findings suggest that attrition may not strongly threaten the validity of results from treatment outcome studies.