Patient characteristics
A total of 109 adults with CHD were enrolled in this study. The patients were predominantly women (n = 76, 69.7%). The participants’ overall mean age was 37.8 years (SD = 12.7, 95% CI 35.4–40.2); the mean age of the male and female patients was 33.7 years (SD = 13.4, 95% CI 29.0–38.5) and 39.6 (SD = 12.0, 95% CI 36.9–42.3) years, respectively. A majority of patients (n = 70, 64.2%) were older than 30 years. The characteristics of patients are summarized in Table 1. In addition, many patients had an education level of less than high school (n = 49, 45%); were unmarried (never married, widowed, divorced, separated; n = 30, 27.5%); were unemployed or had unstable employment (n = 27, 24.8%); and had complex CHD or pulmonary artery hypertension (PAH) (n = 16, 14.7%). Notably, most patients had unrepaired CHD (n = 81, 74.3%), or repaired palliation (n = 5, 4.6%).
Characteristics of quality of life
The overall mean EQ-DS and EQ-VAS were 0.792 (SD = 0.122, 95% CI 0.769–0.815) and 66.3 (SD = 12.5, 95% CI 63.9–68.7), respectively. The overall mean EQ-DS was significantly higher than EQ-VAS (p < 0.001, Student t-test). A significant number of adults with CHD had poor QOL (EQ-DS < 0.65: n = 13, 11.9%; EQ-VAS < 65: n = 45, 41.3%). Table 2 summarises in details the distribution of EQ-5D-5L scale. Additionally, the most common problems reported were pain/discomfort (n = 95, 87.2%) followed by anxiety/depression (n = 83, 76.1%), mobility problems (n = 46, 42.2%), and problems with usual activities (n = 41, 37.6%), whereas the least reported complaint was regarding self-care (n = 11, 10.1%).
Characteristics of health status
The overall mean SWLS was 25.2 ± 4.3 (95% CI 24.3–25.9). Specifically, 3.7% participants were dissatisfied, 5.5% were slightly dissatisfied, 2.8% reported neural, 42.2% were slightly satisfied, 36.7% satisfied, and 9.2% extremely satisfied. According to the HADS, the overall mean score for anxiety was 6.9 (SD = 4.4, 95% CI 6.1–7.8), and the overall mean score for depression was 5.9 (SD = 3.8, 95% CI 5.2–6.6). The anxiety component revealed that 18.7% (n = 20) patients experienced significant anxiety. Whiles, 11% (n = 12) of patients displayed significant symptoms of depression.
Association between quality of life, health status and biological-social characteristics in adults with congenital heart disease
As shown in Table 3, significant differences exist among the EQ-DS subgroups that were classified according to age, education level, employment status. The mean EQ-DS in patients aged > 30 years was lower than in whom aged ≤ 30 years (0.764 [SD = 0.125], 95% CI 0.734–0.794 vs 0.841 [SD = 0.097], 95% CI 0.81–0.873, p = 0.001 in overall; 0.766 [SD = 0.111], 95% CI 0.704–0.827 vs 0.853 [SD = 0.086], 95% CI 0.81–0.896, p = 0.016 in men; 0.764 [SD = 0.13], 95% CI 0.729–0.799 vs 0.831 [SD = 0.106], 95% CI 0.782–0.879, p = 0.039 in women; using the Student t-test; respectively). The mean EQ-DS in patients who had an education level less than high school was lower in whom had education level of high school and more (0.754 [SD = 0.13], 95% CI 0.716–0.791 vs 0.827 [SD = 0.104], 95% CI 0.8–0.855, p = 0.002 in overall; 0.746 [SD = 0.132], 95% CI 0.652–0.841 vs 0.863 [SD = 0.061], 95% CI 0.835–0.891, p = 0.002 in men; using Student t-test; respectively). The mean EQ-DS in patients without employment or unstable employment was lower than in employed patients (0.754 [SD = 0.136], 95% CI 0.7–0.808 vs 0.807 [SD = 0.114], 95% CI 0.782–0.833, p = 0.049 in overall; 0.737 [SD = 0.151], 95% CI 0.598–0.877 vs 0.848 [SD = 0.071], 95% CI 0.817–0.878, p = 0.01 in men; using the Student t-test; respectively). Moreover, the mean EQ-DS in employed women was lower than employed men as (0.79 [SD = 0.125], 95% CI 0.756–0.823 vs 0.848 [SD = 0.071], 95% CI 0.817–0.878, p = 0.037; using Student t-test; respectively).
As shown in Table 4, there existed significant differences of the mean EQ-VAS between subgroups that were classified according to age, education level, employment status, and CHD type. The mean EQ-VAS was lower in patients aged > 30 years comparing with patients aged ≤ 30 years (64.3 [SD = 13.1], 95% CI: 61.2–67.4 vs 69.9 [SD = 10.8], 95% CI: 66.4–73.4, p = 0.024 in overall; 60.7 [SD = 12.1], 95% CI: 53.6–67.8 vs 72.2 [SD = 10.2], 95% CI: 67.0–77.1, p = 0.008 in men; using the Student t-test; respectively). The mean EQ-VAS in patients with an education level less than high school, was lower in whom had education level as high school and more (63.2 [SD = 11.9], 95% CI: 59.7–66.6 vs 69.5 [SD = 12.0], 95% CI: 66.3–72.7, p = 0.008 in overall; 61.0 [SD = 13.7], 95% CI: 51.2–70.8 vs 71.9 [SD = 9.1], 95% CI: 67.6–76.1, p = 0.015 in men; using the Student t-test; respectively). The mean EQ-VAS in unemployed patients or patients with unstable employment was lower than in employed patients (61.3 [SD = 10.0], 95% CI: 57.4–65.2 vs 68.4 [SD = 12.5], 95%C I, 65.6–71.2, p = 0.009 in overall; 58.6 [SD = 13.5], 95% CI: 46.1–71.1 vs 71.1 [SD = 9.6], 95% CI: 67.1–75.2, p = 0.009 in men; using Student t-test; respectively). The mean EQ-VAS in complex CHD/ PAH patients was lower than in simple CHD patients (60.0 [SD = 14.1], 95% CI: 52.5–67.5 vs 67.4 [SD = 12.0], 95% CI: 64.9–69.9, p = 0.029 in overall; 56.0 [SD = 11.4], 95% CI: 41.8–70.2 vs 68.8 [SD = 12.0], 95% CI: 64.2–73.5, p = 0.034 in men; using the Student t-test; respectively). Moreover, the mean EQ-DS in unmarried women was 58.5 (SD = 16.9, 95% CI: 48.3–68.7), which was lower than in married women as 67.6 (SD = 11.0, 95% CI: 64.8–70.4) with p = 0.016, using the Student t-test.
Figure 1 shows prevalence of poor QOL by subgroups, in adults with CHD. Notably, the prevalence of poor QOL that was defined as EQ-DS < 0.65 in complex CHD or PAH patients was higher than in simple CHD patients (31.3%, n = 5 vs 8.6%, n = 8, p = 0.01; using the Chi-square test; respectively). While the prevalence of poor QOL that was defined as EQ-VAS < 65 in patients aged > 30 years, was higher than in patients aged ≤ 30 years (50%, n = 35 vs 25.6%, n = 10, p = 0.013; using the Chi-square test; respectively), the prevalence of poor QOL that was defined as EQ-VAS < 65 in patients with an education level less than high school, was higher than in whom had an education level as high school and more (55.1%, n = 27 vs 28.6%, n = 16, p = 0.006; using Chi-square test; respectively) and the prevalence of poor QOL that was defined as EQ-VAS < 65 in unemployed patients or patients who had unstable employment, was higher than that of employed patients (66.7%, n = 18 vs 37.6%, n = 35, p = 0.001; using Chi-square test; respectively).
Figure 2 shows prevalence of dissatisfaction by subgroups in adults with CHD. Notably, the prevalence of dissatisfaction in unmarried patients was higher married patients (20%, n = 6 vs 5.1%, n = 4, p = 0.016; using the Fisher’s exact test; respectively).
Figure 3 shows prevalence of anxiety and depression by subgroups in adults with CHD. Notably, prevalence of anxiety in unemployed patients or patients who had unstable employment was higher than in employed patients (34.6%, n = 9 vs 14.1%, n = 11, p = 0.022; using Chi-square test; respectively) and prevalence of depression in unemployed patients or patients who had unstable employment was higher than in employed patients (29.6%, n = 8 vs 5.1%, n = 4, p = 0.002; using the Fisher’s exact test; respectively). Prevalence of anxiety in complex CHD/ PAH patients was higher than in simple CHD patients (40%, n = 6 vs 15.2%, n = 14, p = 0.022; using Chi-square test; respectively). Prevalence of depression in patients aged > 30 years was higher than in patients aged ≤ 30 years (17.1%, n = 12 vs 0%, n = 0, p = 0.004; using Fisher’s exact test; respectively). Prevalence of depression in patients with an education level less than high school was higher than that of patients with an education level as high school and more (22.4%, n = 0.001 vs 1.8%, n = 1, p = 0.001; using Fisher’s exact test; respectively).
The results of stratified univariable and multivariable logistic regressions in the prediction of poor QOL and health status are summarized in Table 5. Using multivariable logistic regression, poor QOL (EQ-DS < 0.65) was associated with being complex CHD/ PAH (OR = 4.55, 95% CI 1.26–16.4, p = 0.021). Poor QOL (EQ-VAS < 65) was associated with being unemployed/ unstable employment (OR = 4.16, 95% CI 1.64–10.56, p = 0.003). Dissatisfaction was associated with being unmarried (OR = 4.63, 95% CI 1.2–17.86, p = 0.026). Anxiety was associated with being unemployed/ unstable employment (OR = 3.63, 95% CI 1.23–10.72, p = 0.02), and having a complex CHD/ PAH (OR = 4.19, 95% CI 1.2–14.56, p = 0.024). Depression was associated with being unemployed/ unstable employment (OR = 7.68, 95% CI 2.09–28.25, p = 0.002).