Associations of Impulsivity and Risky Decision-Making with E-Cigarette-Related Outcomes Among Adolescents with Congenital Heart Disease: Variable- and Person-Oriented Approaches.

Adolescents with congenital heart disease (CHD) have elevated risk for acquired cardiovascular complications, increasing their vulnerability to e-cigarette-related health harms. Impulsivity and risky decision-making have been associated with adolescent substance use, but the relationships between these factors and e-cigarette-related outcomes among cardiovascular at-risk adolescents with CHD are unknown. This cross-sectional study aimed to (a) determine the associations of impulsivity and risky decision-making with e-cigarette-related outcomes (i.e. susceptibility, ever use, perceptions of harm and addictiveness) via variable-oriented analysis (logistic regression), (b) identify groups of adolescents with similar profiles of impulsivity and risky decision-making via exploratory person-oriented analysis (latent profile analysis; LPA), and (c) examine differences on e-cigarette-related outcomes between profile groups. Adolescents aged 12 to 18 years with CHD (N = 98) completed a survey assessing impulsivity facets (Short UPPS-P) and e-cigarette-related outcomes and were administered a risky decision-making task (Iowa Gambling Task, Version 2; IGT2). In variable-oriented analyses, impulsivity facets (negative urgency, positive urgency, lack of premeditation) but not risky decision-making were associated with e-cigarette susceptibility and ever use. The exploratory LPA identified two groups with similar patterns of responding on the Short UPPS-P and IGT2 labeled "Low Impulsivity" and "High Impulsivity," which were primarily characterized by significant differences in negative and positive urgency. Adolescents in the High Impulsivity group had increased odds of e-cigarette susceptibility but not ever use compared to the Low Impulsivity group. This work indicates that strategies to prevent e-cigarette use among adolescents with CHD may be enhanced by addressing impulsivity, particularly negative and positive urgency.

Implications of Cardiac Scarring on Body Image Disturbance Among Young Adults With Congenital Heart Defects.

BACKGROUND: Many individuals with congenital heart disease (CHD) undergo open heart surgery, resulting in prominent scarring. However, little research has assessed the impact of surgical scarring on body image in this population. OBJECTIVE: Within this cross-sectional study, associations between body image concerns, anxiety and depression symptoms, and health-related quality of life among individuals with CHD were evaluated. METHODS: Young adults with CHD (N = 138) completed the Body Image Disturbance Questionnaire along with other patient-reported outcome measures. RESULTS: Scores on the Body Image Disturbance Questionnaire were lower (mean, 1.3 ± 0.5) than populations with diabetes amputations, craniofacial conditions, idiopathic scoliosis, and clinical controls. Higher Body Image Disturbance Questionnaire scores were reported among women (P = .003) and were associated with greater anxiety (P = .000) and depression (P = .13) after controlling for sex. CONCLUSIONS: Body image concerns related to cardiac surgery scarring are especially prominent in women and associated with greater emotional distress, suggesting potential clinical relevance for evaluating body image concerns in persons with CHD.

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association.

Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.

Anxiety and Depression in Adults With Congenital Heart Disease.

BACKGROUND: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample. OBJECTIVES: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease-International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms. METHODS: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category. RESULTS: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001). CONCLUSIONS: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603).

Age moderates change in disease-related stress among congenital heart disease survivors: a 6-year follow-up.

AIMS: As congenital heart disease (CHD) survivors age, they are confronted with elevated risk of cardiovascular morbidity and increasingly complex disease self-management demands. Given that stress is associated with poor physical and psychosocial outcomes, it is crucial to examine how disease-related stress changes over time in this population. However, this outcome has received little research attention to date. This study aimed to identify demographic and clinical predictors of change in disease-related stress over 6 years among CHD survivors. METHODS AND RESULTS: Congenital heart disease survivors (N = 252, Mage = 25.6 ± 7.1, 52.9% female) completed the first 13 items of the Responses to Stress Questionnaire, adapted for use among CHD survivors, to assess disease-related stressors at study entry (T1) and 6-year follow-up (T2). Age, gender, estimated family income, and New York Heart Association (NYHA) functional class at T1 were entered into mixed linear models to determine their impact on change in disease-related stress. Older age (P < 0.001), lower income (P < 0.001), and presence of functional limitations (NYHA ≥ II) (P < 0.001) predicted greater increases in disease-related stress. When controlling for NYHA, functional class, and income, a significant time by age interaction was identified such that disease-related stress increased over time among those who were adolescents at T1 [b = 4.20, P = 0.010, 95% confidence interval (1.01, 7.40)], but remained stable among young adults. CONCLUSION: The transition from adolescence to adulthood may be a period of increasing disease-related stress. Healthcare providers should consider screening adolescents for elevated disease-related stress during transition education and provide resources to bolster resilience.

Ethical inclusion: Risks and benefits of research from the perspective of perinatal people with opioid use disorders who have experienced incarceration.

BACKGROUND: Research ethics guidelines and emphasis on representation in research guide the inclusion of marginalized groups, including people with perinatal opioid use disorders (OUD) and people experiencing incarceration in the United States. However, insights from participants regarding the risks and benefits of participation are not adequately considered. The aim of this study was to examine the risks and benefits of research participation from the perspective of pregnant/postpartum people with OUD who have experienced incarceration. DESIGN: We recruited people who had experience with perinatal incarceration and were either currently pregnant or postpartum, and at least 18 years old. All participants met the clinical criteria for OUD. Our study did not have exclusion criteria based on gender, race, or ethnicity. SETTING: Participants were either currently incarcerated at the North Carolina Correctional Institute for Women in Raleigh, North Carolina, United States or had previously experienced perinatal incarceration and were recruited from a perinatal substance use disorder treatment program located in North Carolina. PARTICIPANTS: Between 9/2021-4/2022, we completed 12 interviews with pregnant/postpartum people with OUD, approximately half who were currently incarcerated and half with a recent history of perinatal incarceration. INTERVENTION/MEASUREMENT: Interviews were conducted via Webex phone or video. The interviews followed a scripted interview guide and lasted one hour on average. Interview transcripts were analyzed using the Rigorous and Accelerated Data Reduction technique to produce an overarching thematic framework. FINDINGS: Our analysis identified benefits, including the personal advantage of self-expression, helping others and contributing to change, and financial incentives. Risks included stigma and breach of confidentiality, misunderstanding of the distinction between research and advocacy, and limited ability to share their whole experience. CONCLUSIONS: Participant-identified benefits of research mirrored those from other marginalized populations, though participant-identified risks were novel and nuanced. Recruitment and consent should move beyond normative research ethics committees protocol language to consider the perspectives of participants.

Healthcare Use Among Black and White Congenital Heart Disease Medicaid Enrollees.

Congenital heart disease (CHD) is the most common birth anomaly in the US. Research shows lost-to-follow-up trends and racial disparities in healthcare use. This study examines racial differences in healthcare use among Medicaid-covered children with CHD. Using 2010-2019 claims data from a pediatric Medicaid Accountable Care Organization, 960 Black and White children with complex CHD and ≥ 3 years of continuous Medicaid coverage were identified. Three cohorts were constructed (starting age: < 1-year-olds, 1-5-year-olds, 6-15-year-olds) and followed for 3 years. Multivariate analysis assessed annual healthcare use (cardiology, primary care, emergency department) by race, adjusting for patient and provider covariates. Overall, 51% of patients had an annual cardiology visit, and 54% had an annual primary care visit. Among the 1-5-year-old cohort, Black children were predicted to be 13% less likely to have an annual cardiology visit compared to their White counterparts (p = 0.001). Older Black children were predicted to be more likely to have a primary care visit compared to their White counterparts. Nearly half of Medicaid-enrolled children with complex CHD did not receive recommended cardiology care. Young Black children were less likely to receive an annual cardiac visit, while older Black children were more likely to receive primary care. While the percentage with an annual cardiac visit was low, the majority had seen a cardiologist within the 3-year window, suggesting these children are still receiving cardiology care, if less frequently than recommended. Opportunities exist for cardiology and primary care to collaborate to ensure patients receive timely recommended care.

Young adults with congenital heart disease heading to college: Are college health centers and providers prepared?

BACKGROUND: An estimated 1.4 million adults in the United States have congenital heart disease (CHD). As this population grows and many pursue postsecondary education, these adults' health care needs and concerns should be at the forefront for providers, particularly nurse practitioners, at college health centers. PURPOSE: To understand how college health centers and providers identify and manage the care of students with chronic conditions to further support their health care transition, with a focus on students with CHD. METHODOLOGY: Qualitative key informant interviews were performed with providers at five college health centers to understand the processes in place and the challenges health care providers on college campuses face when caring for students with CHD. RESULTS: Most of the college health centers did not have formalized processes in place to care for these students. Although many felt that they had the capabilities in their health centers to manage these students' maintenance/preventive care needs, fewer felt comfortable with their urgent or emergent care needs. The onus was often on students or parents/guardians to initiate these transitions. CONCLUSIONS: This study highlights some challenges to providing care to students with chronic conditions like CHD. More collaborative relationships with specialists may be critical to ensuring that all the care needs of chronic disease students are met on college campuses. IMPLICATIONS: Nurse practitioners, who often staff these clinics, are well positioned to support this transition onto campuses and lead the development of processes to identify these students, ease care management transitions, and ensure easy provider communication that allow students with chronic diseases to thrive on campus.

PrEP and HIV prevention decision-making among social network members of women who have experienced incarceration: a qualitative study.

ABSTRACTIncarceration and HIV are a syndemic for US women, yet very few women who have experienced incarceration use pre-exposure prophylaxis (PrEP) for HIV. We conducted semi-structured interviews with 32 participants recruited by women who have experienced incarceration from their social networks, informed by the modified social ecological model for PrEP. Emergent themes from the interviews included individual-level (low personal HIV risk assessment, personal responsibility for HIV prevention, and decisions in addiction versus recovery), network-level (influential sex partners and the importance of trust, supportive treatment peers, and high-risk but indifferent drug use networks), community-level (stigma, and mitigation of stigma in supportive substance use disorder treatment environments), and public policy-level (incarceration and PrEP cost and access) determinants. PrEP interventions for women who have experienced incarceration and their networks will need to incorporate contingency planning into HIV risk assessment, navigate complex network dynamics, and be situated in trusted contexts to address structural barriers.

The Association of Global and Disease-Related Stress With Susceptibility to and Use of E-Cigarettes and Marijuana Among Adolescents With Congenital Heart Disease.

OBJECTIVE: Adolescents with congenital heart disease (CHD) are exposed to disease-related stressors and have elevated risk for cardiovascular and cognitive complications that are exacerbated by e-cigarettes and marijuana. The aims of this cross-sectional study are to: (1) identify the association between perceived global and disease-related stress and susceptibility to e-cigarettes and marijuana, (2) determine if the association between stress and susceptibility differs by gender, and (3) explore the association between stress and ever use of e-cigarettes and marijuana among adolescents with CHD. METHODS: Adolescents with CHD (N = 98; aged 12-18 years) completed self-report measures of susceptibility to/ever use of e-cigarettes and marijuana and global and disease-related stress. RESULTS: Susceptibility to e-cigarettes and marijuana was reported by 31.3% and 40.2% of adolescents, respectively. Ever use of e-cigarettes and marijuana was reported by 15.3% and 14.3% of adolescents, respectively. Global stress was associated with susceptibility to and ever use of e-cigarettes and marijuana. Disease-related stress was associated with susceptibility to marijuana. Females reported more global and disease-related stress than males, but the association of stress with susceptibility to e-cigarettes and marijuana did not differ by gender. CONCLUSIONS: Susceptibility to e-cigarettes and marijuana is common among adolescents with CHD and is associated with stress. Future work to examine the longitudinal associations between susceptibility, stress, and use of e-cigarettes and marijuana is warranted. Global stress may be an important consideration in the development of strategies to prevent these risky health behaviors among adolescents with CHD.

Ambivalence is associated with decreased physical activity and cardiorespiratory fitness among adolescents with critical congenital heart disease.

BACKGROUND: Adolescents with congenital heart disease (CHD) are insufficiently physically active. Given that increasing physical activity may reduce their cardiovascular risk, it is important to identify correlates of this behavior. Perceived benefits of and barriers to physical activity are associated with physical activity engagement. Existing research has only considered these constructs separately. This population may be ambivalent toward physical activity (i.e., perceive both strong benefits and barriers). The association of ambivalence and physical activity related outcomes is unknown among this at-risk population. OBJECTIVE: Determine the association of ambivalence and sedentary behavior, moderate-to-vigorous physical activity (MVPA), and cardiorespiratory fitness (VO2Peak) among adolescents with CHD. METHODS: The present study is an analysis of data from an eligibility assessment for a randomized clinical trial of an intervention to promote MVPA among adolescents aged 15 to 18 years with moderate or complex CHD. Participants (N = 84) completed a survey assessing perceived benefits and barriers from which ambivalence toward physical activity was calculated, an exercise stress test to measure VO2Peak, and wore an accelerometer for one week to determine their engagement in sedentary behavior and MVPA. Linear regression analyses determined associations between ambivalence and physical activity related outcomes. RESULTS: Greater ambivalence toward physical activity was associated with increased sedentary behavior, decreased MVPA, and reduced VO2Peak, adjusting for demographic and clinical covariates. CONCLUSIONS: Ambivalence is associated with objectively measured physical activity (sedentary behavior, MVPA) and a biomarker of cardiovascular health (VO2Peak). Screening for ambivalence may help clinicians identify those most likely to benefit from physical activity-related education.

Structural Racism, Social Determinants of Health, and Provider Bias: Impact on Brain Development in Critical Congenital Heart Disease.

Critical congenital heart disease (cCHD) has neurodevelopmental sequelae that can carry into adulthood, which may be due to aberrant brain development or brain injury in the prenatal and perinatal/neonatal periods and beyond. Health disparities based on the intersection of sex, geography, race, and ethnicity have been identified for poorer pre- and postnatal outcomes in the general population, as well as those with cCHD. These disparities are likely driven by structural racism, disparities in social determinants of health, and provider bias, which further compound negative brain development outcomes. This review discusses how aberrant brain development in cCHD early in life is affected by reduced access to quality care (ie, prenatal care and testing, postnatal care) due to divestment in non-White neighbourhoods (eg, redlining) and food insecurity, differences in insurance status, location of residence, and perceived interpersonal racism and bias that disproportionately affects pregnant people of colour who have fewer economic resources. Suggestions are discussed for moving forward with implementing strategies in medical education, clinical care, research, and gaining insight into the communities served to combat disparities and bias while promoting cultural humility.

Difficulties With Executive Function Are Associated With Risky Health Behaviors Among Young Adult Congenital Heart Defect Survivors.

BACKGROUND: Adults with congenital heart defects (CHDs) have an increased risk for cardiovascular complications, but few are in optimal cardiovascular health. Executive function deficits, which are elevated among CHD survivors, may contribute to engagement in behaviors that increase cardiovascular risk. OBJECTIVE: The aim of this study was to identify the association between executive function and the health risk behaviors of tobacco use, saturated fat intake, and insufficient physical activity among young adults with CHDs. METHODS: Young adults with CHDs completed the Behavior Rating Inventory of Executive Function-Adult Version, which yields composite and 9 individual domain scores (eg, inhibition, working memory). Participants also completed self-report measures of tobacco use, saturated fat intake, and physical activity. Linear and logistic regression models determined the association between executive function and risky health behaviors, adjusting for demographic factors, disease status, and emotional distress. RESULTS: One in 10 young adults with CHDs reported clinically significant difficulties with global executive function. Difficulties with global executive function were associated with increased tobacco use ( P = .018) and greater saturated fat intake ( P = .015) but not insufficient physical activity ( P = .902). Difficulties with inhibition were specifically associated with increased tobacco use ( P = .003) and greater saturated fat intake ( P = .007), and problems with self-monitoring were associated with increased tobacco use ( P = .017). CONCLUSIONS: Executive function difficulties are associated with self-reported engagement in health risk behaviors among young adults with CHDs. Health behavior interventions for adult CHD survivors may require additional modifications that consider executive function problems, particularly difficulties with inhibition.

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.

The influence of social relationships on PrEP attitudes among women with incarceration experience in the Southeastern USA.

Women who have experienced incarceration face a disproportionately high risk of acquiring HIV. Despite efficacy of pre-exposure prophylaxis (PrEP) for HIV, very few women with incarceration histories are using PrEP. Our objective was to learn how sexual, drug-use and social relationships shape decisions about PrEP among women who have experienced incarceration. We used an inductive approach to analyse data from four focus groups undertaken with women who had previously experienced incarceration recruited from three community-based organisations. We identified public policy (medical distrust, lack of prevention in prisons and jails, and cost and coverage of PrEP); community (incarceration stigma, gossip as prevention); social and sexual network (positive peer and parenting relationships, distrust of sexual partners, and networks as a source of risk); and individual-level (active addiction or recovery, change after incarceration, and medical concerns) factors influencing the use of PrEP. Actions and interventions to improve PrEP uptake among women who have experienced incarceration must take account of the multilevel context of HIV prevention decisions.

Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.

BACKGROUND: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II. METHODS/DESIGN: APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. DISCUSSION: APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.

Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association.

Although resilience and high quality of life are demonstrated by many individuals with congenital heart disease, a range of significant psychological challenges exists across the life span for this growing patient population. Psychiatric disorders represent the most common comorbidity among people with congenital heart disease. Clinicians are becoming increasingly aware of the magnitude of this problem and its interplay with patients' physical health, and many seek guidance and resources to improve emotional, behavioral' and social outcomes. This American Heart Association scientific statement summarizes the psychological outcomes of patients with congenital heart disease across the life span and reviews age-appropriate mental health interventions, including psychotherapy and pharmacotherapy. Data from studies on psychotherapeutic, educational' and pharmacological interventions for this population are scarce but promising. Models for the integration of mental health professionals within both pediatric and adult congenital heart disease care teams exist and have shown benefit. Despite strong advocacy by patients, families' and health care professionals, however, initiatives have been slow to move forward in the clinical setting. It is the goal of this scientific statement to serve as a catalyst to spur efforts for large-scale research studies examining psychological experiences, outcomes, and interventions tailored to this population and for integrating mental health professionals within congenital heart disease interdisciplinary teams to implement a care model that offers patients the best possible quality of life.

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.

Engaging Families in Adult Cardiovascular Care: A Scientific Statement From the American Heart Association.

Family engagement empowers family members to become active partners in care delivery. Family members increasingly expect and wish to participate in care and be involved in the decision-making process. The goal of engaging families in care is to improve the care experience to achieve better outcomes for both patients and family members. There is emerging evidence that engaging family members in care improves person- and family-important outcomes. Engaging families in adult cardiovascular care involves a paradigm shift in the current organization and delivery of both acute and chronic cardiac care. Many cardiovascular health care professionals have limited awareness of the role and potential benefits of family engagement in care. Additionally, many fail to identify opportunities to engage family members. There is currently little guidance on family engagement in any aspect of cardiovascular care. The objective of this statement is to inform health care professionals and stakeholders about the importance of family engagement in cardiovascular care. This scientific statement will describe the rationale for engaging families in adult cardiovascular care, outline opportunities and challenges, highlight knowledge gaps, and provide suggestions to cardiovascular clinicians on how to integrate family members into the health care team.