Highlights
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Reproductive counseling is scarce for women with congenital heart disease (CHD).
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Women with CHD were more likely to have children than men with CHD.
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Severe CHD increases the likelihood of receiving reproductive advice.
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Young, single, low-income women received less counseling.
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Gender-specific, multidisciplinary reproductive counseling in CHD care is essential.
Abstract
Background
Improved survival of individuals with congenital heart disease (CHD) into adulthood has made reproductive health a crucial aspect of CHD care. Despite existing guidelines on heritability, contraception, pregnancy, and postpartum care, little is known about CHD survivors’ experiences and attitudes toward reproductive health. This study aimed to examine reproductive health outcomes and experiences among adults with CHD, with a focus on female survivors.
Methods
Data were drawn from the CHD PULSE (Project to Understand Lifelong Survivor Experience) study, a cross-sectional survey conducted from September 2021 to April 2023. Participants were adults (≥18 years) with at least 1 CHD intervention at 1 of 11 U.S. Pediatric Cardiac Care Consortium centers. CHD severity was categorized based on initial diagnosis and intervention. Categorical and continuous variables were analyzed using Chi-square and Kruskal-Wallis tests, respectively.
Results
Among 3,073 respondents (1,704 females, 1,369 males), 48% of female participants reported receiving no reproductive counseling. Factors significantly associated with receiving counseling included older age, later age at last surgery, marital history, severe CHD, higher income, government insurance, and more comorbidities ( P <.001). Women were significantly more likely to have biological children than men (40.4% vs 37.5%, P <.0001).
Conclusion
Reproductive counseling is infrequent among women with CHD, especially among younger, unmarried, low-income individuals with less severe CHD and fewer comorbidities. Significant gender disparities in reproductive outcomes emphasize the need for tailored, gender-specific reproductive health counseling for CHD survivors.
Graphical abstract
Background
Advancements in diagnosis, medical management, and surgical treatments for congenital heart disease (CHD) have significantly improved survival rates, with 97% of children diagnosed currently reaching adulthood. Consequently, addressing reproductive health has become increasingly important in the care of CHD. Most individuals with CHD are sexually active, , and women with CHD share similar motivations to conceive regardless of the severity of their condition. The modified World Health Organization (WHO) classification assigns pregnancy risk for women with CHD to 4 classes, from minimal risk (Class I) to extremely high risk (Class IV). Class IV patients, facing severe mortality or morbidity risks, are advised against pregnancy, with termination recommended if pregnancy occurs.
The American Heart Association (AHA) recommends prepregnancy counseling for all women with CHD, involving an adult CHD cardiologist to assess maternal cardiac, obstetrical risks, and fetal risks, as well as potential long-term risks to the mother. Comprehensive reproductive counseling is also essential for both men and women with CHD to discuss heritability concerns. It should occur at or soon after reaching sexual maturity, covering the effective and safe contraceptive options, particularly for women with CHD. However, studies indicate that healthcare providers infrequently discuss pregnancy-related risks to maternal and fetal health or the safety of contraception methods related to their heart condition. , Reported unintended pregnancy rates among adult women with CHD range from 32% in 1 study to 54% in another.
Despite established guidelines on heritability, contraception, pregnancy, and postpartum care for CHD survivors, little is known about how individuals with CHD experience reproductive healthcare or their understanding and attitudes toward the care they receive. This study seeks to bridge this gap by examining reproductive health outcomes, counseling experiences, and knowledge in both women and men with CHD, with a particular focus on factors influencing reproductive health in female CHD survivors. Using data from a large, multicenter cross-sectional survey, this study evaluates the prevalence of reproductive counseling and explores sociodemographic and clinical factors associated with counseling disparities.
Methods
Study design
Data for this study was obtained from the Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE) study. CHD PULSE is a cross-sectional survey conducted between September 2021 and April 2023. It surveyed adult CHD survivors identified by the Pediatric Cardiac Care Consortium (PCCC), a 47-center North American registry of cardiac catheterizations, surgical operations, and autopsies performed for infants, children, and adults with CHD since 1982. The study was approved by the Western Institutional Review Board and each participating center’s local institutional review board, per that institution’s policy.
Study participants
Participants were living adults over 18 years old who had undergone at least 1 intervention for CHD at one of the 11 U.S. centers in the PCCC included in CHD PULSE. Each participant was assigned to a CHD severity group based on his/her initial diagnosis and the type of intervention documented in PCCC data. CHD severity was categorized as mild, moderate, severe 2-ventricle, or single ventricle using an adapted classification scheme initially introduced in the Canadian Conference on the Care of Adults with CHD.
Survey
Surveys were mailed to those eligible to be completed by themselves or a proxy. The survey questions spanned multiple domains, including demographics, surgical history, health insurance, healthcare utilization, visits to heart specialists, general health and disability, anthropometrics, education and work history, and COVID-19 (Oster et al. ). The survey questions were worded similarly to those used by the U.S. Centers for Disease Control and Prevention in the Congenital Heart Survey to Recognize Outcomes, Needs, and Well-being initiative for comparability.
Outcomes of interest
This analysis focuses on several reproductive health questions asked to both male and female participants about family planning. Additionally, it includes questions specific to female participants regarding contraception, pregnancy risks, and pregnancy outcomes. These questions encompass the participants’ recall of advice received from healthcare providers about pregnancy. Female participants who answered the question on pregnancy counseling were divided into 3 groups based on whether they were (1) told to avoid pregnancy because of their heart problem, (2) were not told to avoid pregnancy, but were told about special concerns about being pregnant because of their heart problem, or (3) not told about any pregnancy concerns by any healthcare provider.
Statistical analysis
Categorical variables were presented as frequencies and percentages and were compared using chi-square tests. Continuous data was displayed as medians with interquartile ranges (IQR) and compared using Kruskal-Wallis tests. Characteristics and reproductive outcomes were compared between males and females and between reported counseling groups. Results were stratified by sex and CHD severity.
Log binomial regression models estimated the univariable likelihood of being told to avoid pregnancy or told of pregnancy concerns among female participants with CHD. The main outcome was recategorized into a binary variable for whether female participants were told to avoid pregnancy or informed of risks versus not told at all. Results were given as prevalence ratios with 95% confidence intervals and p-values. Prevalence ratios are less likely to overestimate the strength of an association for nonrare outcomes (prevalence >10%) compared to odds ratios. We examined the association of different factors related to being informed about pregnancy concerns by a healthcare provider: last visit to cardiology care, being told of the necessity of lifelong care, ever delaying or avoiding getting pregnant due to heart health, being advised about the safest birth control due to a heart problem, intentions for pregnancy, the number of times ever pregnant, and the number of times ever given birth. We also analyzed several covariates: age at survey, age at last surgery, CHD severity, race/ethnicity, pregnancy-associated comorbidities, mental health, insurance status, education history, income levels, marital history, and proxy response. A secondary analysis focused on pregnancy-associated comorbidities.
In a multivariable analysis, we individually modeled the family planning-related factors for their association with the type of pregnancy counseling received, adjusted by the above covariates. Since the log binomial model failed to converge, a Poisson regression with log link and robust sandwich estimator was used instead. All models met assumptions and converged. There was a moderate ( r > 0.4) association found between some covariates: age at survey and marital status ( r = 0.52), age at survey and age at last surgery ( r = 0.47), and marital status and income level ( r = 0.46) (all P <.0001). Since the correlation was not strong, these covariates were kept in the model. Backward selection was utilized to iteratively remove covariates with a p-value>0.20 to ensure the most parsimonious model.
Statistical significance of variables was assessed at an alpha = 0.05 level. Unknown and missing responses were not included in statistical calculations for significance or modelling. All statistical analyses were performed using SAS version 9.4 (Cary, NC).
Results: male and female reproductive health analysis
Demographics
Of the 14,322 eligible subjects, 3,133 (1,727 female and 1,406 male) responded to the CHD PULSE survey, representing a 21.9% response rate. After excluding those who did not answer reproductive health questions (23 females and 37 males), 1,704 female and 1,369 male respondents were included. The median age of female respondents at the time of response was 32.5 years, with an interquartile range (IQR) of 27.2 to 39.5 years, while the median age of males was 33.2 years (IQR 27.2-40.2 years). Among all respondents, 86.6% of females and 89.2% of males were non-Hispanic white; the most common CHD severity was moderate. The male demographics are outlined in Supplementary Table 1. The female overall demographics are outlined in Table 1 , with additional medical characteristics in Table 2 , stratified by the type of reproductive counseling they received.
Table 1
Comparison of female respondent demographics by type of reproductive counseling received
| Variable |
Overall
N = 1,704 |
Avoid
N = 373 N (%) |
Concern
N = 508 N (%) |
Not told
N = 823 N (%) |
P -value | |
|---|---|---|---|---|---|---|
| Age | Median (IQR) | 32.5 (27.2, 39.5) | 35.8 (31.1, 42.9) | 32.7 (27.9, 38.5) | 30.8 (26.2, 37.7) | <.001 |
| Age group | <25 | 258 | 35 (13.6%) | 69 (26.7%) | 154 (59.7%) | <.001 |
| 25-29 | 383 | 49 (12.8%) | 113 (29.5%) | 221 (57.7%) | ||
| 30-34 | 394 | 88 (22.3%) | 128 (32.5%) | 178 (45.2%) | ||
| 35-39 | 276 | 73 (26.4%) | 93 (33.7%) | 110 (39.9%) | ||
| 40+ | 393 | 128 (32.6%) | 105 (26.7%) | 160 (40.7%) | ||
| Race | NH White | 1,466 | 316 (21.6%) | 448 (30.6%) | 702 (47.9%) | .409 |
| NH Black | 82 | 18 (22.0%) | 19 (23.2%) | 45 (54.9%) | ||
| Hispanic | 76 | 19 (25.0%) | 24 (31.6%) | 33 (43.4%) | ||
| NH Other | 69 | 17 (24.6%) | 14 (20.3%) | 38 (55.1%) | ||
| Unknown | 11 | 3 (27.3%) | 3 (27.3%) | 5 (45.4%) | ||
| Highest education | No HS degree | 54 | 21 (38.9%) | 8 (14.8%) | 25 (46.3%) | <.001 |
| HS degree | 585 | 133 (22.7%) | 128 (21.9%) | 324 (55.4%) | ||
| Associate or bachelor’s degree | 726 | 150 (20.7%) | 243 (33.5%) | 333 (45.9%) | ||
| Graduate or professional degree | 335 | 69 (20.6%) | 129 (38.5%) | 137 (40.9%) | ||
| Unknown | 4 | 0 (0.0%) | 0 (0.0%) | 4 (100.0%) | ||
| Income | < $24,999 | 298 | 77 (25.8%) | 61 (20.5%) | 160 (53.7%) | <.001 |
| $25,000-$49,999 | 295 | 66 (22.4%) | 76 (25.8%) | 153 (51.9%) | ||
| $50,000-$74,999 | 244 | 58 (23.8%) | 73 (29.9%) | 113 (46.3%) | ||
| > $75,000 | 565 | 112 (19.8%) | 215 (38.1%) | 238 (42.1%) | ||
| Unknown | 302 | 60 (19.9%) | 83 (27.5%) | 159 (52.6%) | ||
| Perception of finances | Excellent | 353 | 70 (19.8%) | 122 (34.6%) | 161 (45.6%) | .002 |
| Good | 936 | 191 (20.4%) | 290 (31.0%) | 455 (48.6%) | ||
| Only fair | 306 | 84 (27.5%) | 79 (25.8%) | 143 (46.7%) | ||
| Poor | 97 | 28 (28.9%) | 15 (15.5%) | 54 (55.7%) | ||
| Unknown | 12 | 0 (0.0%) | 2 (16.7%) | 10 (83.3%) | ||
| Insurance status | Uninsured | 67 | 14 (20.9%) | 15 (22.4%) | 38 (56.7%) | .297 |
| Insured | 1,625 | 358 (22.0%) | 491 (30.2%) | 776 (47.8%) | ||
| Unknown | 12 | 1 (8.3%) | 2 (16.7%) | 9 (75.0%) | ||
| Insurance plan | Private or military | 1,018 | 204 (20.0%) | 350 (34.4%) | 464 (45.6%) | <.001 |
| Government | 318 | 99 (31.1%) | 61 (19.2%) | 158 (49.7%) | ||
| More than 1 | 92 | 12 (13.0%) | 15 (16.3%) | 65 (70.7%) | ||
| None or unknown | 276 | 58 (21.0%) | 82 (29.7%) | 136 (49.3%) | ||
| Marital status | Ever married | 886 | 215 (24.3%) | 328 (37.0%) | 343 (38.7%) | <.001 |
| Never married | 805 | 154 (19.1%) | 177 (22.0%) | 474 (58.9%) | ||
| Unknown | 13 | 4 (30.8%) | 3 (23.1%) | 6 (46.2%) | ||
| Survey Response | Self-Response | 1,566 | 52 (22.5%) | 496 (31.7%) | 718 (45.8%) | <.001 |
| By Proxy (total) | 119 | 16 (13.5%) | 8 (6.7%) | 95 (79.8%) | ||
|
Parent
Sibling/other family Partner/spouse/caregiver (other) |
105
8 6 |
13 (12.4 %)
2 (25%) 1 (16.7%) |
6 (5.7%)
1 (12.5%) 1(16.7%) |
86 (81.9%)
5 (62.5 %) 4 (66.7%) |
||
| Unknown | 19 | 5 (26.3%) | 4 (21.1%) | 10 (52.6%) |
P-values were calculated by chi-square and Kruskal-Wallis tests without unknown values. Bold p-values are significant.
Abbreviations: 2V, two ventricles; HS, high school; IQR, interquartile range; NH, non-Hispanic.
Table 2
Comparison of female respondent cardiac and medical characteristics by type of reproductive counseling received
| Variable |
Overall
N = 1,704 |
Avoid
N = 373 N (%) |
Concern
N = 508 N (%) |
Not told
N = 823 N (%) |
P- value | |
|---|---|---|---|---|---|---|
| CHD severity | Mild | 568 | 28 (4.9%) | 104 (18.3%) | 436 (76.8%) | <.001 |
| Moderate | 643 | 131 (20.4%) | 216 (33.6%) | 296 (46.0%) | ||
| Severe 2V | 233 | 73 (31.3%) | 104 (44.6%) | 56 (24.0%) | ||
| Single ventricle | 122 | 90 (73.8%) | 24 (19.7%) | 8 (6.6%) | ||
| Unclassified | 138 | 51 (37.0%) | 60 (43.5%) | 27 (19.6%) | ||
| Age at last surgery (y) | <1 | 377 | 45 (11.9%) | 114 (30.2%) | 218 (57.8%) | <.001 |
| 1 to 5 | 524 | 89 (17.0%) | 135 (25.8%) | 300 (57.3%) | ||
| 6 to 17 | 362 | 77 (21.3%) | 118 (32.6%) | 167 (46.1%) | ||
| Over 17 | 363 | 151 (41.6%) | 125 (34.4%) | 87 (24.0%) | ||
| Unknown | 78 | 11 (14.1%) | 16 (20.5%) | 51 (65.4%) | ||
| Last visit with cardiologist | 0-2 years ago | 1,051 | 333 (31.7%) | 385 (36.6%) | 333 (31.7%) | <.001 |
| 3+ years ago | 644 | 39 (6.1%) | 121 (18.8%) | 484 (75.2%) | ||
| Unknown | 9 | 1 (11.1%) | 2 (22.2%) | 6 (66.7%) | ||
| Necessity of lifelong cardiac care discussed as a teenager or young adult | No | 557 | 40 (7.2%) | 75 (13.5%) | 442 (79.4%) | <.001 |
| Yes | 1,107 | 323 (29.2%) | 425 (38.4%) | 359 (32.4%) | ||
| Unknown | 40 | 10 (25.0%) | 8 (20.0%) | 22 (55.0%) | ||
| Comorbidities | Congestive heart failure | 186 | 98 (52.7%) | 44 (23.7%) | 44 (23.7%) | <.001 |
| Diabetes | 75 | 24 (32.0%) | 15 (20.0%) | 36 (48.0%) | .045 | |
| Hypertension | 206 | 75 (36.4%) | 53 (25.7%) | 78 (37.9%) | <.001 | |
| Clotting problems (stroke, pulmonary embolism, other) | 148 | 72 (48.6%) | 34 (23.0%) | 42 (28.4%) | <.001 | |
| Malignancy (cancer) | 50 | 10 (20.0%) | 10 (20.0%) | 30 (60.0%) | .201 | |
| Arrhythmia | 557 | 211 (37.9%) | 180 (32.3%) | 166 (29.8%) | <.001 | |
| Endocarditis | 28 | 13 (46.4%) | 10 (35.7%) | 5 (17.9%) | .001 | |
| Myocardial infarction | 25 | 13 (52.0%) | 6 (24.0%) | 6 (24.0%) | <.001 | |
| Kidney disease | 35 | 14 (40.0%) | 6 (17.1%) | 15 (42.9%) | .024 | |
| Liver disease | 49 | 34 (69.4%) | 8 (16.3%) | 7 (14.3%) | <.001 | |
| Pulmonary hypertension | 49 | 30 (61.2%) | 8 (16.3%) | 11 (22.4%) | <.001 | |
| Mental Health (depression, anxiety) | 827 | 234 (28.3%) | 220 (26.6%) | 373 (45.1%) | <.001 | |
| Number of comorbidities | Median (IQR) | 2 (1, 3) | 3 (2, 5) | 2 (1, 3) | 1 (1, 3) | <.001 |
| Number of comorbidities | 0 | 309 | 23 (7.4%) | 108 (35.0%) | 178 (57.6%) | <.001 |
| 1 | 447 | 69 (15.4%) | 135 (30.2%) | 243 (54.4%) | ||
| 2 | 351 | 53 (15.1%) | 111 (31.6%) | 187 (53.3%) | ||
| 3 | 262 | 71 (27.1%) | 78 (29.8%) | 113 (43.1%) | ||
| 4 | 164 | 61 (37.2%) | 51 (31.1%) | 52 (31.7%) | ||
| 5+ | 171 | 96 (56.1%) | 25 (14.6%) | 50 (29.2%) |
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