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 (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 79.2 (SD = 12.2, 95% CI: 76.9–81.5) 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 < 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. Symptoms of depression were common; 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 was lower in patients aged > 30 years compared with patients aged ≤ 30 years (76.4 [SD = 12.5], 95% CI: 73.4–79.4 vs 84.1 [SD = 9.7], 95% CI: 81.0–87.3, p = 0.001 in overall; 76.6 [SD = 11.1], 95% CI: 70.4–82.7 vs 85.3 [SD = 8.6], 95% CI: 81.0–89.6, p = 0.016 in men; 76.4 [SD = 13.0], 95% CI: 72.9–79.9 vs 83.1 [10 .6], 95% CI: 78.2–87.9, p = 0.039 in women, using the Student t-test). The mean EQ-DS was lower in patients who had an education level less than high school compared to patients who had education level of high school and more (75.4 [SD = 13.0], 95% CI: 71.6–79.1 vs 82.7 [SD = 10.4], 95% CI: 80.0–85.5, p = 0.002 in overall; 74.6 [SD = 13.2], 95% CI: 65.2–84.1 vs 86.3 [SD = 6.1], 95% CI: 83.5–89.1, p = 0.002 in men, using Student t-test). The mean EQ-DS was lower in unemployed patients or patients with unstable employment compared to employed patients (75.4 [SD = 13.6], 95% CI: 70.0–80.8 vs 80.7 [SD = 11.4], 95% CI: 78.2–83.3, p = 0.049 in overall; 73.7 [SD = 15.1], 95% CI: 59.8–87.7 vs 84.8 [SD = 7.1], 95% CI: 81.7–87.8, p = 0.01 in men, using the Student t-test). Moreover, the mean EQ-DS in employed women was 79.0 (SD = 12.5, 95% CI: 75.6–82.3) and lower than employed men as 84.8 (SD = 7.1, 95% CI: 81.7–87.8) with p = 0.037, using Student t-test.
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). The mean EQ-VAS was lower in patients who had an education level less than high school, compared to patients who 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). The mean EQ-VAS was lower in unemployed patients or patients with unstable employment comparing with 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). The mean EQ-VAS was lower in complex CHD or pulmonary artery hypertension patients compared to 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). Moreover, the mean EQ-DS in unmarried women was 58.5 (SD = 16.9, 95% CI: 48.3–68.7), which was lower than 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 < 65 in complex CHD or pulmonary artery disease patients was higher than those in simple CHD patients (31.3%, n = 5 vs 8.6%, n = 8, p = 0.01, using the Chi-square test). While the prevalence of poor QOL that was defined as EQ-VAS < 65 in patients aged > 30 years, was higher than patients aged ≤ 30 years (50%, n = 35 vs 25.6%, n = 10, p = 0.013, using the Chi-square test), prevalence of poor QOL that was defined as EQ-VAS < 65 in patients who had an education level less than high school, and higher than patients who 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) and prevalence of poor QOL that was defined as EQ-VAS < 65 in unemployed patients or patients with 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).
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).
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 that of employed patients (34.6%, n = 9 vs 14.1%, n = 11, p = 0.022, using Chi-square test) and prevalence of depression in unemployed patients or patients who had unstable employment was higher than that of employed patients (29.6%, n = 8 vs 5.1%, n = 4, p = 0.002, using the Fisher’s exact test). Prevalence of anxiety in complex CHD or pulmonary artery hypertension patients was higher than that of simple patients (40%, n = 6 vs 15.2%, n = 14, p = 0.022, using Chi-square test). Prevalence of depression in married patients was higher than that of unmarried patients (17.1%, n = 12 vs 0%, n = 0, p = 0.004, using Fisher’s exact test). Prevalence of depression in patients who had an education level less than high school was higher patients who had education level as high school and more (22.4%, n = 0.001 vs 1.8%, n = 1, p = 0.001, using the Fisher’s exact test).
The result 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 < 65) was associated with being a patient with a complex CHD or pulmonary artery disease (OR = 4.55; 95% CI: 1.26–16.4; p = 0.021). Poor QOL (EQ-VAS < 65) was associated with being unemployed or having an 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 or an unstable employment (OR = 3.63; 95% CI: 1.23–10.72; p = 0.02), and having a complex CHD or pulmonary hypertension (OR = 4.19; 95% CI: 1.2–14.56, p = 0.024). Depression was associated with being unemployed or having an unstable employment (OR = 7.68; 95% CI: 2.09–28.25; p = 0.002).