Adult congenital heart disease care in a municipal public health system.

Specialty care is associated with improved outcomes for adults with adult CHD and must be extended to the underserved. A retrospective cohort study was performed to describe the provision of care to adult CHD patients in America's largest municipal public health system including patient demographics, diagnostic and therapeutic procedures, and adherence to guideline-recommended surveillance. We identified 229 adult CHD patients aged >18 years through electronic medical records. The most common diagnoses were atrial septal defect, ventricular septal defect, patent ductus arteriosus, and valvular pulmonary stenosis. In total, 65% had moderate or greater anatomic complexity. A large number of patients were uninsured (45%), non-white (96%), and non-English speaking (44%). One hundred forty-six patients (64%) presented with unrepaired primary defects. Fifty eight patients underwent primary repair during the study period; 48 of those repairs were surgical and 10 were transcatheter. Collaboration with an affiliated Comprehensive Care Center was utilised for 28% of patients. A high proportion of patients received adult CHD speciality visits (78%), echocardiograms (66%), and electrocardiograms (56%) at the guideline-recommended frequency throughout the study period. There was no significant difference in the rate of adherence to guideline-recommended surveillance based on insurance status, race/ethnicity, or primary language status. The proportion of patients who had guideline-recommended adult CHD visits, echocardiograms, and electrocardiograms was significantly lower for those with more advanced physiological stages. These results can inform the provision of adult CHD care in other public health system settings.

Reproductive Health in Congenital Heart Disease: Preconception, Pregnancy, and Postpartum.

The prevalence of congenital heart disease (CHD) in pregnancy is rising due to the improved survival of patients with CHD into childbearing age. The profound physiological changes that occur during pregnancy may worsen or unmask CHD, affecting both mother and fetus. Successful management of CHD during pregnancy requires knowledge of both the physiological changes of pregnancy and the potential complications of congenital heart lesions. Care of the CHD patient should be based on a multidisciplinary team approach beginning with preconception counseling and continuing into conception, pregnancy, and postpartum periods. This review summarizes the published data, available guidelines and recommendations for the care of CHD during pregnancy.

Adherence and Exercise Capacity Improvements of Patients With Adult Congenital Heart Disease Participating in Cardiac Rehabilitation.

Background As the number of adults with congenital heart disease increases because of therapeutic advances, cardiac rehabilitation (CR) is increasingly being used in this population after cardiac procedures or for reduced exercise tolerance. We aim to describe the adherence and exercise capacity improvements of patients with adult congenital heart disease (ACHD) in CR. Methods and Results This retrospective study included patients with ACHD in CR at New York University Langone Rusk Rehabilitation from 2013 to 2020. We collected data on patient characteristics, number of sessions attended, and functional testing results. Pre-CR and post-CR metabolic equivalent task, exercise time, and maximal oxygen uptake were assessed. In total, 89 patients with ACHD (mean age, 39.0 years; 54.0% women) participated in CR. Referral indications were reduced exercise tolerance for 42.7% and post-cardiac procedure (transcatheter or surgical) for the remainder. Mean number of sessions attended was 24.2, and 42 participants (47.2%) completed all 36 CR sessions. Among participants who completed the program as well as pre-CR and post-CR functional testing, metabolic equivalent task increased by 1.3 (95% CI, 0.7-1.9; baseline mean, 8.1), exercise time increased by 66.4 seconds (95% CI, 21.4-111.4 seconds; baseline mean, 536.1 seconds), and maximal oxygen uptake increased by 2.5 mL/kg per minute (95% CI, 0.7-4.2 mL/kg per minute; baseline mean, 20.2 mL/kg per minute). Conclusions On average, patients with ACHD who completed CR experienced improvements in exercise capacity. Efforts to increase adherence would allow more patients with ACHD to benefit.

COVID-19 in Adults With Congenital Heart Disease.

BACKGROUND: Adults with congenital heart disease (CHD) have been considered potentially high risk for novel coronavirus disease-19 (COVID-19) mortality or other complications. OBJECTIVES: This study sought to define the impact of COVID-19 in adults with CHD and to identify risk factors associated with adverse outcomes. METHODS: Adults (age 18 years or older) with CHD and with confirmed or clinically suspected COVID-19 were included from CHD centers worldwide. Data collection included anatomic diagnosis and subsequent interventions, comorbidities, medications, echocardiographic findings, presenting symptoms, course of illness, and outcomes. Predictors of death or severe infection were determined. RESULTS: From 58 adult CHD centers, the study included 1,044 infected patients (age: 35.1 ± 13.0 years; range 18 to 86 years; 51% women), 87% of whom had laboratory-confirmed coronavirus infection. The cohort included 118 (11%) patients with single ventricle and/or Fontan physiology, 87 (8%) patients with cyanosis, and 73 (7%) patients with pulmonary hypertension. There were 24 COVID-related deaths (case/fatality: 2.3%; 95% confidence interval: 1.4% to 3.2%). Factors associated with death included male sex, diabetes, cyanosis, pulmonary hypertension, renal insufficiency, and previous hospital admission for heart failure. Worse physiological stage was associated with mortality (p = 0.001), whereas anatomic complexity or defect group were not. CONCLUSIONS: COVID-19 mortality in adults with CHD is commensurate with the general population. The most vulnerable patients are those with worse physiological stage, such as cyanosis and pulmonary hypertension, whereas anatomic complexity does not appear to predict infection severity.

Development and initial testing of the self-care of chronic illness inventory.

AIM: The aim was to develop and psychometrically test the self-care of chronic illness Inventory, a generic measure of self-care. BACKGROUND: Existing measures of self-care are disease-specific or behaviour-specific; no generic measure of self-care exists. DESIGN: Cross-sectional survey. METHODS: We developed a 20-item self-report instrument based on the Middle Range Theory of Self-Care of Chronic Illness, with three separate scales measuring Self-Care Maintenance, Self-Care Monitoring, and Self-Care Management. Each of the three scales is scored separately and standardized 0-100 with higher scores indicating better self-care. After demonstrating content validity, psychometric testing was conducted in a convenience sample of 407 adults (enrolled from inpatient and outpatient settings at five sites in the United States and ResearchMatch.org). Dimensionality testing with confirmatory factor analysis preceded reliability testing. RESULTS: The Self-Care Maintenance scale (eight items, two dimensions: illness-related and health-promoting behaviour) fit well when tested with a two-factor confirmatory model. The Self-Care Monitoring scale (five items, single factor) fitted well. The Self-Care Management scale (seven items, two factors: autonomous and consulting behaviour), when tested with a two-factor confirmatory model, fitted adequately. A simultaneous confirmatory factor analysis on the combined set of items supported the more general model. CONCLUSION: The self-care of chronic illness inventory is adequate in reliability and validity. We suggest further testing in diverse populations of patients with chronic illnesses.

A Mixed Methods Evaluation of the Feasibility and Acceptability of an Adapted Cardiac Rehabilitation Program for Home Care Patients.

Home care clinicians have an opportunity to improve care for post-hospitalization patients with cardiovascular disease. This mixed methods study examined the feasibility and acceptability of an adapted cardiac rehabilitation (CR) program for the home care setting. Surveys measuring patient self-care and knowledge were administered to patients (n = 46) at baseline and at 30-day follow-up. Semi-structured interviews were conducted with patients (n = 28) and home care clinicians (n = 11) at completion of the program. All survey indicators demonstrated a trend towards improvement, with a statistically significant increase in the self-care management subscale (p = 0.002). Qualitative analyses identified three patient themes (self-awareness, nutrition, motivation) and three clinician themes (systematic approach, motivation, patient selection process). Incorporating CR into the home care setting proved to be a feasible and acceptable approach to increasing access to CR services among elderly patients.

Developing an Adapted Cardiac Rehabilitation Training for Home Care Clinicians: PATIENT PERSPECTIVES, CLINICIAN KNOWLEDGE, AND CURRICULUM OVERVIEW.

PURPOSE: There is limited evidence that home care clinicians receive education on the core competencies of cardiac rehabilitation (CR). This article describes the development and implementation of a CR training program adapted for home care clinicians, which incorporated the viewpoints of homebound patients with cardiovascular disease. METHODS: Literature and guideline reviews were performed to glean curriculum content, supplemented with themes identified among patients and clinicians. Semistructured interviews were conducted with homebound patients regarding their perspectives on living with cardiovascular disease and focus groups were held with home care clinicians regarding their perspectives on caring for these patients. Transcripts were analyzed with the constant comparative method. A 15-item questionnaire was administered to home care nurses and rehabilitation therapists pre- and posttraining, and responses were analyzed using a paired sample t test. RESULTS: Three themes emerged among patients: (1) awareness of heart disease; (2) motivation and caregivers' importance; and (3) barriers to attendance at outpatient CR; and 2 additional themes among clinicians: (4) gaps in care transitions; and (5) educational needs. Questionnaire results demonstrated significantly increased knowledge posttraining compared with pretraining among home care clinicians (pretest mean = 12.81; posttest mean = 14.63, P < .001). There was no significant difference between scores for nurses and rehabilitation therapists. CONCLUSIONS: Home care clinicians respond well to an adapted CR training to improve care for homebound patients with cardiovascular disease. Clinicians who participated in the training demonstrated an increase in their knowledge and skills of the core competencies for CR.