Heart failure (HF) is characterized by significant symptoms, compromised quality of life, frequent hospital admissions, and high mortality rates; palliative care (PC) is, therefore, highly relevant for patients with HF and their clinicians. Multiple guidelines and consensus statements recommend the provision of PC alongside HF management. However, few resources exist to guide the integration of PC into HF care, for both primary PC (provided by HF clinicians in the course of HF care) and specialty PC (provided by PC specialists).
View Article and Find Full Text PDFBackground: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population.
View Article and Find Full Text PDFCardiovascular disease (CVD) clinicians who care for seriously ill patients frequently report that they do not feel confident nor adequately prepared to manage patients' palliative care (PC) needs. With the goal, therefore, of increasing PC knowledge and skills amongst interprofessional clinicians providing CVD care, the ACC's PC Workgroup designed, developed, and implemented a comprehensive PC online educational activity. This paper describes the process and 13-month performance of this free, online activity for clinicians across disciplines and levels of training, "Palliative Care for the Cardiovascular Clinician" (PCCVC).
View Article and Find Full Text PDFBackground: Adult congenital heart disease (ACHD) can negatively impact quality of life (QOL). Strengthening resilience may improve this and other psychosocial outcomes important for living a meaningful life.
Objectives: The purpose of this study was to describe resilience and key psychosocial health outcomes in ACHD and evaluate the associations between resilience and these outcomes.
Objective: To evaluate for correlation between exercise capacity as assessed by peak oxygen consumption (pVO) measurement during a cardiopulmonary exercise test (CPET) and smartwatches reporting this parameter in patients with adult congenital heart disease (ACHD) complex lesions.
Methods: A prospective study that included patients with ACHD either a Fontan circulation or a right ventricle supporting the systemic circulation who underwent two separate CPETs at least 1 year apart. Generalised estimating equations linear regression was performed to identify factors associated with correlation between smartwatch and CPET-derived pVO.
Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients' psychosocial health.
Objective: We aimed to describe patients' resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD.
Background: High-risk cardiovascular disease (CVD) prevalence in pregnant patients is increasing. Management of this complex population is not well studied, and little guidance is available regarding labour and delivery planning for optimal outcomes.
Objective: We aimed to describe the process for and outcomes of our centre's experience with the main operating room (OR) caesarean deliveries for patients with high-risk CVD, including procedural and postpartum considerations.
Aim: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease.
Methods: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review.
Background: While the incidence of pregnancy has increased among individuals with adult CHD, little has been described about considerations and experiences of patients with adult CHD regarding pregnancy.
Objective: We aimed to explore patients' motivations, concerns, and decision-making processes regarding pregnancy.
Methods: In April 2019-January 2020, we conducted in-depth telephone interviews with patients (n = 25) with simple, moderate, or complex adult CHD, who received prenatal care at the University of Washington during 2010-2019 and experienced a live birth.
Context: Physicians who specialize in pulmonary arterial hypertension (PAH) care for patients facing a serious, life-limiting illness. Palliative care is underutilized in patients with PAH, and little is known about how best to provide palliative care to this patient population.
Objectives: Using a qualitative approach, assess physicians' perspectives on barriers and facilitators to the use of palliative care in PAH.
The COVID-19 pandemic poses risk for worsened quality of life in patients with adult congenital heart disease. In a qualitative thematic analysis of semi-structured interviews conducted July 2020 to August 2021, we examined the pandemic's impact on participants' (N = 25) experiences with self-perception and coping. All had moderate or complex disease; median age 32 years.
View Article and Find Full Text PDFBackground: Because adverse events are more common than in the general population, pregnancy is a high-risk experience for some patients with adult congenital heart disease (ACHD). Guidelines for pregnancy are based on published literature, informed by adverse clinical outcomes with less priority given to patients' lived experiences. This study aims to describe ACHD patients' expectations for and experiences with pregnancy, including factors that influenced patients' perceived quality of care.
View Article and Find Full Text PDFPregnancy risk assessment for patients with adult congenital heart disease (ACHD) must include physiologic and anatomic impacts. We aimed to determine whether maternal cardiac and pregnancy outcomes vary by disease severity defined according to the following 3 different classifications: ACHD anatomic severity, ACHD physiologic class, and modified World Health Organization (mWHO) class. Cardiac outcomes included a composite of arrhythmia, heart failure, stroke, and thromboembolism.
View Article and Find Full Text PDFPsychosocial and supportive care interventions are a cornerstone of palliative care science, yet there is little published guidance regarding how to develop, test, adapt, and ultimately disseminate evidence-based interventions. Our objective was to describe the application of a single intervention-development model in multiple populations of patients with serious illness. Specifically, we use the "Promoting Resilience in Stress Management" (PRISM) intervention as an exemplar for how the Obesity Related Behavioral Intervention Trials (ORBIT) intervention-development model may be applied to: 1) create an initial palliative care intervention; 2) adapt an existing intervention for a new patient-population; 3) expand an existing intervention to include new content; and, 4) consider dissemination and implementation of a research-proven intervention.
View Article and Find Full Text PDFContext: Women with adult congenital heart disease (ACHD) have an increased risk of adverse events during pregnancy. Advance care planning may therefore be an appropriate component of prenatal care.
Objective: The aim of this study was to describe the perspectives of women with ACHD surrounding advance care planning during pregnancy.
Purpose: Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.
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