Background Identify demographic and medical status indicators that account for variability in physical and emotional health-related quality of life (QoL) among young adults with congenital heart disease (CHD) as compared to traditional lesion severity categories. Methods Cross-sectional study of 218 young adult survivors of CHD (mean = 25.7, SD = 7.1 years). Participants were recruited from pediatric and adult CHD clinics at a pediatric and an adult hospital. Stepwise linear regression examined the unique contribution of demographic (age; sex; estimated income) and medical status indicators (comorbid conditions; treatment modality; ventricular function/functional capacity) on QoL compared to traditional lesion severity categories (simple; moderate; complex). Results Lesion severity category accounted for a small portion of the variance in physical QoL (3%), but was not associated with emotional QoL. Lesion severity did not significantly contribute to the variability in physical QoL once other variables were entered. Having an estimated income of ≤ $30,000, taking more than one cardiac-related medication, and having a New York Heart Association (NYHA) functional class designation > I was associated with poorer physical QoL and explained 23% of the variability. NYHA class was the only variable that explained a unique proportion of variance (7%) in emotional QoL, and having a NYHA class designation > I was associated with greater risk for poorer emotional functioning. Conclusions Findings indicated that several indicators readily available to treatment teams may provide important information about the risk for poor patient-reported outcomes of physical and emotional QoL among CHD survivors.

There is a continuing debate concerning “adjustments” to heart period variability [i.e., heart rate variability (HRV)] for the heart period [i.e., increases inter-beat-intervals (IBI)]. To date, such arguments have not seriously considered the impact a demographic variable, such as gender, can have on the association between HRV and the heart period. A prior meta-analysis showed women to have greater HRV compared to men despite having shorter IBI and higher heart rate (HR). Thus, it is plausible that men and women differ in the association between HRV and HR/IBI. Thus, the present study investigates the potential moderating effect of gender on the association between HRV and indices of cardiac chronotropy, including both HR and IBI. Data from 633 participants (339 women) were available for analysis. Cardiac measures were assessed during a 5-min baseline-resting period. HRV measures included the standard deviation of inter-beat-intervals, root mean square of successive differences, and autoregressive high frequency power. Moderation analyses showed gender significantly moderated the association between all HRV variables and both HR and IBI (each p < 0.05). However, results were not consistent when using recently recommended HRV variables “adjusted” for IBI. Overall, the current investigation provides data illustrating a differential association between HRV and the heart period based on gender. Substantial neurophysiological evidence support the current findings; women show greater sensitivity to acetylcholine compared to men. If women show greater sensitivity to acetylcholine, and acetylcholine increases HRV and the heart period, then the association between HRV and the heart period indeed should be stronger in women compared to men. Taken together, these data suggest that routine “adjustments” to HRV for the heart period are unjustified and problematic at best. As it relates to the application of future HRV research, it is imperative that researchers continue to consider the potential impact of gender.

Lower resting vagally mediated heart rate variability (HRV) is thought to reflect poorer function of the neurophysiological pathways underlying emotion regulation (ER) and thus, poorer ER abilities. Sex differences in resting HRV exists such that women typically exhibit higher resting HRV than men. It is proposed that greater HRV in women reflects compensation for greater negative affect such as anxiety and depression. However, research has not yet investigated how the association between resting HRV and every day perceived difficulties in ER may be moderated by sex. The current study sought to test this in a sample of 362 young participants (207 females, mean age of 19). Resting HRV was assessed during a 5-min baseline period using an electrocardiogram. Participants then completed the 36-item Difficulties in Emotion Regulation Scale (DERS) designed to evaluate participant’s daily difficulties in ER. Controlling for several covariates, sex significantly moderated the relationship between resting HRV and ER difficulties, such that women showed a much stronger relationship compared with men. Specifically, women with lower HRV reported greater difficulties in ER compared with men with lower HRV, whereas women with higher HRV reported slightly lesser difficulties in ER compared with all men. Overall, this study supports a deeper understanding of how neurophysiological differences in ER between men and women—as indexed by resting HRV—may contribute to how effectively individuals regulate their emotions on a day-to-day basis, with implications for well-being.

Background: Disease-related stressors for survivors of congenital heart disease (CHD) have been qualitatively described but not quantified nor examined in relationship to important patient-reported outcomes (PROs). Objective: The aims of this study are to (1) identify the types and degree of disease-related stress experienced by CHD survivors based on age, functional status, and sex, (2) examine differences in stress and PROs by age, functional status, and sex, and (3) determine the unique contribution of perceived stress to variability in PROs. Methods: A cross-sectional study of 173 adolescents and emerging and young adults who were recruited from both pediatric and adult CHD clinics was conducted. Participants rated the degree to which they found various aspects of CHD stressful and completed PROs of health-related quality of life and emotional distress. Differences in perceptions of stress across predictors were determined using analyses of variance and χ 2 analyses. The relative contribution of perceived stress predicting PROs was examined using stepwise linear regression. Results: Two items emerged as being stressful for almost half of the sample, including concerns about future health and having scars or other signs of medical procedures. Adolescents reported less perceived stress than emerging or young adults, and survivors with even mild functional limitations reported higher perceived stress than did those without any symptoms. Perceptions of stress significantly contributed to variability in PROs above and beyond other predictors and was the only variable to explain unique variance in emotional distress. Conclusions: Having even mild functional impairment may have significant deleterious consequences on PROs via increased perceptions of stress. Stress may be modifiable using cognitive behavioral therapy.