The different biopsychosocial periods in a woman’s life are all interactively associated with the cardiovascular system. The present study was designed to address questions related to sexuality and reproductive health in a large cohort of women with congenital heart disease. Overall, 536 women (median age 29 years, range 18 to 75) completed a questionnaire during their visit at 2 tertiary care centers for congenital heart disease. Patients were categorized according to their functional class and according to the degree of severity of the underlying heart defect. The median age at menarche was significantly delayed in patients with functional class III-IV and in women with complex or cyanotic anomalies. More than 1/4 of the women (29%) had at least once sought medical advice for menstrual discomforts, and the proportion was significantly increased for those in the worst functional class (49%, p <0.001) and for patients with a cyanotic heart defect (43%, p = 0.03). Overall, 9% reported increased or altered symptoms related to their heart defect during sexual activity. This proportion increased significantly with worsening functional class (6%, 11%, and 26% in functional class I, II, and III-IV, respectively; p = 0.001), increased severity (5%, 8%, and 17% for simple, moderate, and severe heart defects, respectively; p = 0.005), and in women with cyanosis (8% and 28% in acyanotic and cyanotic patients, respectively; p <0.001). In conclusion, to ensure high-quality care for this demanding and growing patient population, physicians must be aware that issues related to the entire reproductive cycle should be considered when counseling these patients.
The different biopsychosocial periods in a woman’s life, including menarche, sexuality, pregnancy, and menopause, are all interactively associated with the cardiovascular system. Nevertheless, contemporary data regarding the sexual and reproductive health of women with congenital heart disease (CHD) are scarce. Most studies have been concerned with pregnancy-related health issues, and only a few have explored sexuality and other aspects of reproductive health in this patient population. Currently, most recommendations and patient information for women with CHD have been based solely on expert knowledge because existing scientific evidence has not provided enough information to design adequate individual counseling strategies. The present study was designed to address questions related to sexuality and reproductive health in a large cohort of women with CHD, with the aim of providing an overview of the actual situation and generate a basis for future prospective and clinical studies.
Methods
During a 12-month period, 536 consecutive adult female patients with CHD, who were seen at the outpatient clinic of 2 tertiary care centers for adults with CHD (Deutsches Herzzentrum München and Deutsches Herzzentrum Berlin) were included. The inclusion criteria were confirmed CHD, age ≥18 years, and written consent. The lack of cognitive competency to understand and complete the questionnaire was the exclusion criterion.
The women were required to complete a questionnaire designed for self-administration. This questionnaire covered different aspects, including demographics and sexual and reproductive health issues. A separate questionnaire was compiled by the treating physician, including cardiac and noncardiac diagnoses and surgical and pharmacologic treatment. The medical records were obtained from all participating patients and reviewed, if necessary.
The medical and surgical records were reviewed for anatomic characteristics before repair and for details of surgical repair and reoperation. Using the medical history and clinical assessment findings, the attending physician classified the patients according to 1 of 4 functional classes. This classification was specially developed for adults with CHD and is similar to the New York Heart Association classification for patients with heart failure. Only 2 patients were in functional class IV. To allow statistical analysis, they were grouped with the 39 patients with functional class III, forming functional class III-IV, a group of symptomatic patients with restrictions even in performing daily activities.
For additional analysis, the patients were assigned a severity code. This codification followed the recommendation of the American College of Cardiology and facilitated the allocation of patients to 1 of 3 degrees of severity (simple, moderate, or severe) depending on the underlying cardiac anomaly and postoperative status.
The data were analyzed using the Statistical Package for Social Sciences, version 12.0 (SPSS, Chicago, Illinois). The descriptive statistics of continuous variables were calculated as the mean ± SD or as the median, in the case of a non-normal distribution. Nominal variables are expressed as frequencies and percentages. Chi-square tests were used to detect differences in the nominal variables between groups, and, if >20% of the expected counts were <5, Fisher’s exact test was applied. Differences between continuous variables were measured with unpaired t tests and with the Mann-Whitney U test when the data did not meet the assumption of normal distribution. Odds ratios were calculated from 2 × 2 tables and are presented with the 95% confidence intervals. The intimate nature of the questioned information might have prevented some of the participants from answering some of the questions. This same reason made on-site control of the completeness of the compiled questionnaires impossible to guarantee maximum confidentiality. Therefore, relative percentages of the answers were calculated, and the number of missing information was always reported for the respective questions.
The institutional ethics committees of the 2 participating centers approved the study.
Results
In the 12-month recruitment period, 536 adult women with CHD and a median age of 29 years (range 18 to 75) were included in the present study. Some baseline characteristics and the diagnoses of the included patients are listed in Tables 1 and 2 . The first menarche, as the culmination of a series of physiologic processes of female puberty, occurred at a mean age of 13.0 ± 1.6 years (range 9 to 19, missing data for 15). Women with more complex heart anomalies and women with a cyanotic heart defect were significantly older at their first menarche ( Table 3 ).
| Variable | Value | Missing Data |
|---|---|---|
| Age (years) | 0 | |
| Median | 29 | |
| Range | 18–75 | |
| Functional class | 20 | |
| I | 264 (51%) | |
| II | 211 (41%) | |
| III–IV | 41 (8%) | |
| Congenital heart disease severity ⁎ | 0 | |
| Simple | 127 (24%) | |
| Moderate | 275 (51%) | |
| Severe | 134 (25%) | |
| Operative or interventional treatment | 1 | |
| Native | 137 (26%) | |
| Interventional | 41 (8%) | |
| Reparative | 300 (56%) | |
| Palliative | 57 (11%) | |
| Reoperated | 110 (20%) † | |
| Cyanosis | 44 (8%) | 5 |
| Among these: Eisenmenger syndrome | 24 (5%) | 23 |
| History of thromboembolism ‡ | 52 (10%) | 24 |
| History of infective endocarditis | 20 (4%) | 18 |
| History of heart failure | 60 (12%) | 21 |
| Arterial hypertension | 39 (7%) | 16 |
| Current smokers | 56 (11%) | 26 |
⁎ According to American College of Cardiology classification.
† Percentage of those who underwent surgery.
‡ Included patients with a history of thrombosis, pulmonary embolism, and/or a cerebrovascular event.
| Main Cardiac Diagnosis | n (%) | Native / Operated | Median Age (years) |
|---|---|---|---|
| Tetralogy of Fallot | 67 (12%) | 0/67 | 30 (18–48) |
| Transposition of great arteries | 52 (10%) | 0/52 | 28 (18–46) |
| Ventricular septal defect | 50 (9%) | 28/22 | 27 (18–54) |
| Atrial septal defect | 46 (9%) | 10/36 | 30 (19–75) |
| Coarctation of aorta | 39 (7%) | 1/38 | 27 (18–60) |
| Aortic stenosis | 34 (6%) | 15/19 | 28 (18–46) |
| Ebstein’s anomaly | 25 (5%) | 6/19 | 45 (19–70) |
| Pulmonary stenosis | 24 (4%) | 10/14 | 27 (19–68) |
| Patent foramen ovale | 22 (4%) | 7/15 | 40 (22–66) |
| Marfan syndrome | 15 (3%) | 11/4 | 34 (20–51) |
| Atrioventricular septal defect (total) | 15 (3%) | 4/11 | 30 (20–65) |
| Tricuspid atresia | 13 (2%) | 3/10 | 29 (18–42) |
| Mitral valve prolapse | 12 (2%) | 9/3 | 27 (19–41) |
| Pulmonary atresia and ventricular septal defect | 10 (2%) | 2/8 | 31 (23–47) |
| Atrioventricular septal defect (partial) | 10 (2%) | 0/10 | 31 (19–43) |
| Truncus arteriosus communis | 9 (2%) | 2/7 | 30 (19–41) |
| Congenitally corrected transposition of great arteries | 9 (2%) | 1/8 | 37 (24–60) |
| Persistent ductus arteriosus | 8 (1%) | 3/5 | 26 (18–59) |
| Double inlet ventricle | 8 (1%) | 2/6 | 26 (21–51) |
| Other ⁎ | 68 (13%) | 23/45 | 28 (19–62) |
| Total | 536 | 137/399 | 29 (18–75) |
⁎ Double outlet right ventricle (n = 10), aortic regurgitation (congenital, n = 7), subaortic stenosis (n = 6), cardiomyopathy (congenital, n = 6), partial anomalous pulmonary venous connection (n = 6), aortic anomalies (congenital, n = 5), mitral regurgitation (congenital, n = 5), pulmonary atresia (n = 4), tricuspid regurgitation (congenital, n = 4), arrhythmias (congenital forms, n = 3), cor triatriatum (n = 2), double-chamber right ventricle (n = 2), Bland-White-Garland syndrome (n = 2), supravalvular aortic stenosis (n = 2), aortopulmonary window (n = 1), arrhythmogenic right ventricular dysplasia (n = 1), interrupted aortic arch (n = 1), and myocardial noncompaction (n = 1).
| Variable | Age at Menarche (years) | p Value | Missing Values | Menstrual Discomfort ⁎ | p Value | Missing Values | Cardiac Complaints During Menstruation | p Value | Missing Values |
|---|---|---|---|---|---|---|---|---|---|
| Functional class | 0.071 | 36 | <0.001 | 68 | 0.001 | 49 | |||
| I | 13.2 | 50 (21%) | 9 (4%) | ||||||
| II | 13.6 | 65 (33%) | 20 (10%) | ||||||
| III–IV | 13.5 | 17 (49%) | 7 (18%) | ||||||
| Heart defect severity | <0.001 | 16 | 0.119 | 50 | 0.205 | 29 | |||
| Simple | 13.1 | 24 (21%) | 5 (4%) | ||||||
| Moderate | 13.3 | 74 (30%) | 24 (9%) | ||||||
| Severe | 14.1 | 41 (33%) | 10 (8%) | ||||||
| Cyanosis | 0.001 | 21 | 0.030 | 54 | 0.029 | 34 | |||
| No | 13.4 | 119 (27%) | 32 (7%) | ||||||
| Yes | 14.2 | 18 (43%) | 7 (16%) |
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