Adults with congenital heart disease (CHD) may experience anxiety specifically related to their medical condition. This review introduces the concepts of health anxiety and heart-focused anxiety, ...summarizes what is currently known about heart-focused anxiety among adults with CHD and offers suggestions to help adult CHD providers address heart-focused anxiety in their patients.
Although minimal research has been conducted specific to this outcome, health anxiety may occur at any point across the lifespan of individuals with CHD. A recent study found that children and adolescents with CHD reported greater health anxiety than community peers. Health anxiety was commonly reported among adults with CHD presenting for psychological assessment. It was linked with older age, trait anxiety, perceived parental overprotection and greater CHD complexity in one study.
Adults with CHD face many potential health-related stressors, including cardiac symptoms, treatments and interventions throughout the lifespan (including surgeries and other invasive procedures), the impact of CHD on daily lives and longer-term health expectations. Providers should be aware that heart-focused anxiety among patients is understandable and perhaps common. Patient-centred education and psychological intervention should be integrated within a comprehensive approach to long-term disease management.
Traditional congenital heart disease (CHD) outcomes include mortality (survival to adulthood and life expectancy) as well as cardiac and noncardiac morbidity. Strategies to identify and manage ...sequelae have primarily focused on objective data obtained though invasive and noninvasive diagnostic approaches. In contrast, patient-reported outcomes (PROs) provide subjective information, using standardized measures, about patients’ health and well-being as reported directly by patients, without interpretation, interference, or assumptions made by clinicians or others. Selection of PRO measures entails thoughtful consideration of who the individuals being surveyed are, why assessment is occurring (eg, what are the domains of interest; clinical vs research), and what processes are in place for acquisition, administration, interpretation, and response. In this review, we focus on 3 domains of PROs for pediatric and adult patients with Fontan physiology: physical health status, psychological functioning, and quality of life. Infants, children, adolescents, and adults with CHD face a spectrum of challenges that might influence PROs across the life span. In general, patients with Fontan palliation tend to have lower physical health status, experience more psychological distress, and have equivalent or reduced quality of life compared with healthy peers. Herein, we provide an overview of PROs among people with Fontan circulation as a group, yet simultaneously emphasize that the optimal way to understand the experiences of any individual patient is to ask and listen. We also offer clinical and research initiatives to improve the adoption and utility of PROs in CHD settings, which show commitment to capturing, understanding, and responding to the patient voice.
L’issue classique des cardiopathies congénitales comprend le décès (survie jusqu’à l’âge adulte et espérance de vie écourtées) ainsi que la morbidité cardiaque et non cardiaque. Les stratégies de dépistage et de prise en charge des séquelles s’articulent essentiellement autour de données objectives obtenues par le biais d’approches diagnostiques invasives et non invasives. En revanche, les données d’autodéclaration des patients fournissent des informations subjectives sur la santé et le bien-être de ces derniers, au moyen de mesures normalisées, de façon directe et sans interprétation, intervention ni hypothèses de la part de cliniciens ou d’autres personnes. La sélection des paramètres d’autodéclaration des patients doit être mûrie et nécessite que l’on sache qui sont les répondants, pourquoi l’évaluation est effectuée (notamment en ce qui concerne la nature des domaines abordés, dans une optique clinique ou de recherche) et quels processus sont en place en matière de collecte, d’administration, d’interprétation et de réaction. Dans le présent article de synthèse, nous nous concentrons sur trois domaines d’autodéclaration des patients pédiatriques et adultes ayant subi l’intervention de Fontan : état de santé physique, bien-être psychologique et qualité de vie. Les nourrissons, les enfants, les adolescents et les adultes atteints de cardiopathies congénitales doivent composer avec un large éventail d’enjeux susceptibles d’influer sur les données d’autodéclaration tout au long de leur vie. Généralement, les patients qui ont subi l’intervention de Fontan tendent à présenter un moins bon état de santé physique, à éprouver plus de détresse psychologique et à avoir une qualité de vie équivalente ou inférieure comparativement à des pairs en bonne santé. Nous donnons ici un aperçu des données d’autodéclaration de personnes ayant subi l’intervention de Fontan, tous cas confondus. Nous soulignons également que la façon optimale de comprendre ce que vit un patient consiste à interroger et à écouter ce dernier. Nous proposons aussi des initiatives à l’intention des cliniciens et des chercheurs en vue d’accroître l’adoption et l’utilité des méthodes d’autodéclaration touchant les cardiopathies congénitales, dans l’optique d’une volonté affichée d’écoute, de compréhension et de réactivité à l’endroit du patient.
It is now expected that most individuals with congenital heart disease will survive to adulthood, including those with complex heart conditions. Maintaining lifelong medical care requires those with ...congenital heart disease to eventually transfer from pediatric to adult-oriented health care systems. Developing health care transition skills and gaining independence in managing one's own health care is imperative to this process and to ongoing medical and psychosocial success. This scientific statement reviews the recent evidence regarding transition and provides resources, components, and suggestions for development of congenital heart disease transition programs with the goals of improving patient knowledge, self-management, and self-efficacy skills to the level they are capable to eventually integrate smoothly into adult-oriented health care. Specifically, the scientific statement updates 3 sections relevant to transition programming. First, there is a review of specific factors to consider, including social determinants of health, psychosocial well-being, and neurocognitive status. The second section reviews costs of inadequate transition including the public health burden and the impairment in individual quality of life. Finally, the last section discusses considerations and suggestions for transition program design including communication platforms, a family-centered approach, and individual models. Although this scientific statement reviews recent literature surrounding transitions of care for individuals with congenital heart disease there remain significant knowledge gaps. As a field, we have yet to determine ideal timing and methods of transition, and barriers to transition and transfer remain, particularly for the underserved populations. The consequences of poor health care transition are great and garnering outcomes and information through organized, multifaceted, collaborative approaches to transition is critical to improving the lifelong care of individuals with congenital heart disease.
Purpose of Review
Adults with congenital heart disease face many potential psychosocial challenges. This review focuses on their experiences of clinically significant anxiety and depression and ...provides recommendations for appropriately timed referrals to mental health professionals.
Recent Findings
Adults with congenital heart disease have a higher probability of experiencing symptoms consistent with mood and anxiety disorders, yet risk factors are not well understood. Although patients as a group are often interested in psychological treatment, there is currently under-recognition and under-treatment of mental health concerns.
Summary
As provider and patient awareness of the biopsychosocial implications of living with congenital heart disease continues to grow, the focus of comprehensive care is broadening to include attention to psychosocial well-being. Care teams are encouraged to create a culture that fosters open and ongoing dialog about emotional well-being, including depression and anxiety, and includes reliable processes for mental health referrals.
Abstract
We are witnessing an unparalleled pandemic caused by the novel Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) associated with coronavirus disease 2019 (COVID-19). Current data ...show that SARS-CoV-2 results in mild flu-like symptoms in the majority of healthy and young patients affected. Nevertheless, the severity of COVID-19 respiratory syndrome and the risk of adverse or catastrophic outcomes are increased in patients with pre-existing cardiovascular disease. Patients with adult congenital heart disease (ACHD)—by definition—have underlying cardiovascular disease. Many patients with ACHD are also afflicted with residual haemodynamic lesions such as valve dysfunction, diminished ventricular function, arrhythmias or cyanosis, have extracardiac comorbidities, and face additional challenges regarding pregnancy. Currently, there are emerging data of the effect of COVID-19 on ACHD patients, but many aspects, especially risk stratification and treatment considerations, remain unclear. In this article, we aim to discuss the broad impact of COVID-19 on ACHD patients, focusing specifically on pathophysiology, risk stratification for work, self-isolation, hospitalization, impact on pregnancy, psychosocial health, and longer-term implications for the provision of ACHD care.
Life expectancy and quality of life for those born with congenital heart disease (CHD) have greatly improved over the past 3 decades. While representing a great advance for these patients, who have ...been able to move from childhood to successful adult lives in increasing numbers, this development has resulted in an epidemiological shift and a generation of patients who are at risk of developing chronic multisystem disease in adulthood. Noncardiac complications significantly contribute to the morbidity and mortality of adults with CHD. Reduced survival has been documented in patients with CHD with renal dysfunction, restrictive lung disease, anemia, and cirrhosis. Furthermore, as this population ages, atherosclerotic cardiovascular disease and its risk factors are becoming increasingly prevalent. Disorders of psychosocial and cognitive development are key factors affecting the quality of life of these individuals. It is incumbent on physicians who care for patients with CHD to be mindful of the effects that disease of organs other than the heart may have on the well-being of adults with CHD. Further research is needed to understand how these noncardiac complications may affect the long-term outcome in these patients and what modifiable factors can be targeted for preventive intervention.
There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care.
The goal of this study was to evaluate the impact of a ...nurse-led transition intervention on lapses between pediatric and adult care.
A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire.
A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032).
A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research CHAPTER 2; NCT01723332)
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Post-traumatic stress disorder (PTSD) is associated with adverse outcomes and increased mortality in cardiac patients. No studies have examined PTSD in the adult congenital heart disease (ACHD) ...population. The objectives of this study were to assess the prevalence of self-reported symptoms of PTSD in patients with ACHD and explore potential associated factors. Patients were enrolled from an outpatient ACHD clinic and completed several validated measures including the Impact of Event Scale-Revised, PTSD Checklist-Civilian Version, and the Hospital Anxiety and Depression Scale. Clinical data were abstracted through medical data review. A total of 134 participants (mean age 34.6 ± 10.6; 46% men) were enrolled. Of the 127 participants who completed the Impact of Event Scale-Revised, 14 (11%) met criteria for elevated PTSD symptoms specifically related to their congenital heart disease or treatment. Of the 134 patients who completed PTSD Checklist-Civilian Version, 27 (21%) met criteria for global PTSD symptoms. In univariate analyses, patients with congenital heart disease–specific PTSD had their most recent cardiac surgery at an earlier year (p = 0.008), were less likely to have attended college (p = 0.04), had higher rates of stroke or transient ischemic attack (p = 0.03), and reported greater depressive symptoms on the Hospital Anxiety and Depression Scale (7 vs 2, p <0.001). In multivariable analysis, the 2 factors most strongly associated with PTSD were depressive symptoms (p <0.001) and year of most recent cardiac surgery (p <0.03). In conclusion, PTSD is present in 11% to 21% of subjects seen at a tertiary referral center for ACHD. The high prevalence of PTSD in this complex group of patients has important implications for the medical and psychosocial management of this growing population.
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