Adults with CHD are a growing patient group and childbirth is a relatively new phenomenon. EQ-5D is commonly used to measure health-related quality of life. We sought to investigate EQ-5D status before, during, and after pregnancy in women with CHD.

We identified 128 pregnancies in 86 CHD women giving birth in Skåne County during 2009–2021. Repeated measures ANOVA was performed to test for differences between the five EQ-5D domains, EQ-VAS, and EQ-index over time points before, the second trimester, the third trimester, and after pregnancy.

Mean age at estimated childbirth was 30.3 (± 4.7) years; 56.25% of births were vaginal deliveries and 43.75% were Caesarean sections. The cohort consisted of patients with double outlet right ventricle (4.7%), transposition (Mustard/Senning 2.3%, arterial switch 4.7%), aortic anomalies (19.5%), Fallot’s anomaly (16.4%), single ventricle (3.9%), shunt lesions (11.7%), cardiomyopathies (4.7%), coronary anomalies (1.6%), arrythmias (0.8%), and valve lesions: aortic (19.5%), mitral (5.5%), and pulmonary (4.7%). The women reported significantly worse mobility (p = 0.007) and higher pain/discomfort (p = 0.049) at trimester 3 compared to before pregnancy. The women had lower EQ-5D index during trimester 3 compared to after pregnancy (p = 0.004). We saw worse mobility during Tri 2 comparing multiparity with primiparity (p = 0.046). Looking at delivery mode, we noted significantly higher anxiety/depression before pregnancy (p =0.023) in women that had a Caesarean section.

In this study, women with CHD reported worse mobility and a higher pain level during Tri 3, although the overall health-related quality of life is acceptably high.

Adults with CHD have reduced work participation rates compared to adults without CHD. We aimed to quantify employment rate among adult CHD patients in a population-based registry and to describe factors and barriers associated with work participation.

We retrospectively identified adults with employment information in the North Carolina Congenital Heart Defects Surveillance Network. Employment was defined as any paid work in a given year. Logistic regression was used to examine patients’ employment status during each year.

The registry included 1,208 adult CHD patients with a health care encounter between 2009 and 2013, of whom 1,078 had ≥1 year of data with known employment status. Overall, 401 patients (37%) were employed in their most recent registry year. On multivariable analysis, the odds of employment decreased with older age and were lower for Black as compared to White patients (odds ratio = 0.78; 95% confidence interval: 0.62, 0.98; p = 0.030), and single as compared to married patients (odds ratio = 0.50; 95% confidence interval: 0.39, 0.63; p < 0.001).

In a registry where employment status was routinely captured, only 37% of adult CHD patients aged 18–64 years were employed, with older patients, Black patients, and single patients being less likely to be employed. Further work is needed to consider how enhancing cardiology follow-up for adults with CHD can integrate support for employment.

Through this study we aimed to assess the educational level and employment status of adults with CHD in Germany.

Data were acquired from an online survey carried out in 2015 by the German National Register for Congenital Heart Defects. A total of 1458 adults with CHD participated in the survey (response rate: 37.6%). For 1198 participants, detailed medical information, such as main cardiac diagnosis and information from medical reports, was available.

Of the participants surveyed (n=1198), 54.5% (n=653) were female, and the mean age was 30 years. The majority of respondents (59.4%) stated that they had high education levels and that they were currently employed (51.1%). Patients with simple CHD had significantly higher levels of education (p<0.001) and were more likely to be employed (p=0.01) than were patients with complex CHD.

More than half of the participants had high education levels and the majority were employed. The association between CHD and its severity and individuals’ educational attainment should be investigated more closely in future studies.