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

Abstract

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.

Health‐Related Quality of Life and Its Association With Outcomes in Adults With Congenital Heart Disease and Heart Failure: Insight From FRESH‐ACHD Registry

“…The severity of the patient's condition influences the baseline scores of most investigated components of QoL, mainly with regard to the physical components, which may explain the significant relationship between physical functioning and role physical with the primary end point on univariate analysis. However, the magnitude of changes for QoL in patients with HF‐related CHD is moderate 33 and may explain why QoL had a lower association with major adverse clinical events compared with markers of organ failure such as PAH, NYHA functional class, renal failure, and BNP. Our results showed baseline characteristics did not allow the identification of patients with worse QoL, except NYHA functional class.…”

Sense of Coherence as a Mediator Between Functional Status and Health-Related Quality of Life in Patients With Heart Failure

“…HF is a complex clinical condition with various signs and symptoms, including poor cardiac function and physical capacity, that results in poor health-related quality of life (HRQOL; Costa et al, 2020). One study conducted across 15 countries reported patients with HF to be older and to have generally poorer physical and mental functioning, sense of coherence (SOC), and quality of life (Lu et al, 2022). A study reported that patients with HF and classified as New York Heart Association (NYHA) Functional Class III or IV, patients with depression, and older patients faced higher risks of poor HRQOL (Gott et al, 2006).…”

ASXL3 gene mutations inhibit cell proliferation and promote cell apoptosis in mouse cardiomyocytes by upregulating lncRNA NONMMUT063967.2

“…The most prevalent related diseases are ventricular septal defects (VSDs), atrial septal defects, and tetralogy of Fallot. CHD increases the risk of heart failure, which is the leading cause of death in CHD patients and represents a severe threat to human health and a substantial socioeconomic burden [ 2 , 3 ]. Because the pathogenesis of CHD is unknown, there are few therapeutic options for CHD, largely surgical [ 4 ].…”