The present study reports on contraceptive use, methods used, and counseling received on contraceptive issues for women with congenital heart disease and provides a brief review of current knowledge of the risks in relation to the different cardiac situations encountered with these specific patients. A total of 536 consecutive adult women with congenital heart disease (median age 29 years) were recruited from 2 tertiary care centers. They underwent a clinical assessment and completed a questionnaire regarding their contraceptive use. Oral contraceptives, condoms, and intrauterine devices were the most commonly used methods. Pregnancy occurred in almost every tenth woman despite the use of contraception. We identified a substantial number of women (20%) who were presently using contraceptive methods that were contraindicated for their specific cardiac condition. Additionally, a high proportion of patients (28%), in the group with high pregnancy-associated risks, were not using contraception despite having a sexual relationship. In our study, 43% of the women had not been counseled about contraception, and 48% had not been informed of the pregnancy-related risks by their treating physician. In conclusion, timely and competent counseling about contraception is important for women with congenital heart disease. Collaboration between cardiologists and gynecologists should be strengthened. Failure to give adequate family planning advice to this patient group could have hazardous consequences, causing an unnecessary risk to mother and child.
The present study reports on the contraceptive use, methods used and, counseling received regarding contraceptive issues for 536 women with congenital heart disease (CHD) and provides a brief review of the current knowledge of risks related to contraception in this patient population.
Methods
During a 12-month period, 536 consecutive adult female patients with CHD, seen at the outpatient clinic of 2 tertiary care centers for adults with CHD, were included. On average, 13% of the eligible patients refused to participate at the 2 centers. The inclusion criteria were confirmed CHD, age ≥18 years, and written informed consent. The refusal to consent and the lack of cognitive competency to understand and complete the questionnaire were the exclusion criteria.
The participants were asked to complete a questionnaire designed for self-administration that covered the demographics, sexual maturation, use of contraceptives, and information-seeking behavior. A separate questionnaire was completed by the treating physician and included cardiac and noncardiac diagnoses and surgical and pharmacologic treatment. The medical records were obtained from all participating patients and reviewed for anatomic characteristics before repair and for the details on surgical repair and reoperation.
From the medical history and clinical assessment, the attending physician classified the patients according to 1 of 4 functional classes. To allow statistical analysis. the 2 patients with functional class IV were grouped with the 39 patients with functional class III, forming the functional class III-IV group, a group of symptomatic patients with restrictions in performing daily activities. For additional analysis, the patients were assigned to 1 of 3 degrees of severity (simple, moderate, and severe), depending on the underlying cardiac anomaly, according to the recommendations of the American College of Cardiology.
Severe heart failure (functional class III and IV), cyanosis, Eisenmenger syndrome, and/or a history of thromboembolism were considered absolute contraindications for the use of combined oral contraceptives (COC); arterial hypertension and/or smoking were considered relative contraindications for the use of COCs. Women with severe cardiac heart failure (functional class III and IV), cyanosis, or Eisenmenger syndrome were grouped as at high risk of pregnancy-related complications.
The data were analyzed using the Statistical Package for Social Sciences, version 12.0 (SPSS, Chicago, Illinois). Appropriate statistical methods were used to describe the distribution of variables. Chi-square tests were used to detect differences in nominal variables between the groups. If >20% of the expected counts were <5, Fisher’s exact test was used. Differences between continuous variables were measured using unpaired t tests, and the Mann-Whitney U test was used when the data did not meet the assumption of normal distribution.
The intimate nature of this questionnaire 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 questionnaires impossible, to guarantee maximum confidentiality. Therefore, the relative percentages of the answers were calculated, and the number with missing information has been reported for each question.
The institutional ethics committees of the 2 participating centers approved the study.
Results
During the 12-month period, 536 adult women with CHD with a median age of 29 years (range 18 to 75) were included in the present study. The diagnoses of the included patients are listed in Table 1 . The severity of the diagnoses was categorized as simple, moderate, and severe in 24%, 51%, and 25% of the patients, respectively. According to the treating physician, 51%, 41%, and 8% of the participants were in functional class I, II, or III-IV, respectively.
| Leading Cardiac Diagnosis | Patients (n) | Native/Operated | Median Age (yrs) |
|---|---|---|---|
| Tetralogy of Fallot | 67 (12%) | 0/67 | 30 (18–48) |
| Transposition of the 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 the 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 the great arteries | 9 (2%) | 1/8 | 37 (24–60) |
| Persistent ductus arteriosus | 8 (2%) | 3/5 | 26 (18–59) |
| Double inlet ventricle | 8 (2%) | 2/6 | 26 (21–51) |
| Other ⁎ | 68 (13%) | 23/45 | 28 (19–62) |
| Total | 536 | 137/399 | 29 (18–75) |
⁎ Aortic valve insufficiency (n = 7), subaortic stenosis (n = 6), double outlet right ventricle (Fallot-type, n = 6), congenital cardiomyopathies (n = 6), partial anomalous pulmonary venous connection (n = 6), aortic aneurysm, ectasia of the great arteries, kinking (n = 5), mitral valve insufficiency (n = 5), double outlet right ventricle (transposition of the great arteries-type, n = 4), pulmonary atresia (n = 4), tricuspid insufficiency (n = 4), cor triatriatum (n = 2), double chambered right ventricle (n = 2), Bland-White-Garland (n = 2), supravalvular aortic stenosis (n = 2), Wolff-Parkinson-White (n = 2), aorto-pulmonary window (n = 1), arrhythmogenic right ventricular dysplasia (n = 1), interrupted aortic arch (n = 1), atrioventricular block third degree (congenital, n = 1), noncompaction myocardium (n = 1).
Of the 536 patients, 35 (6%) reported never having had sexual intercourse. Of the remaining 501 women, 450 provided their age at first sexual intercourse. Their mean age was 17.7 ± 2.5 years (range 12 to 32); 69 of these women (15%) had their first sexual intercourse at ≤15 years old.
Of the 536 women, 29 (5%) had never used contraceptives. For the remaining 473 women (missing data for 34), the mean age at the first use of contraceptives was 17.8 ± 3.0 years (range 12 to 38).
The contraceptive methods used, formerly or at present, are listed in Table 2 . Of the 478 women who had ever used contraceptives, 41 (9%, missing data for 29) indicated that they had become pregnant despite the use of contraception. Three of these patients did not comment on the method used. The other affected women had tried to avoid pregnancy using “coitus interruptus” (n = 7), COCs (n = 18), progestin-only pills (n = 2), natural family planning methods (n = 2), condoms (n = 8), and intrauterine devices (intrauterine device [IUD]; n = 1).
| Contraceptive Method | Former Users (n) ⁎ | Current Users (n) † |
|---|---|---|
| Combined oral contraceptive | 307 (60%) | 132 (37%) |
| Condom | 295 (58%) | 94 (26%) |
| Intrauterine device | 81 (16%) | 43 (12%) |
| Progestin-only pill | 103 (20%) | 39 (11%) |
| Sterilization | 37 (7%) | 26 (7%) |
| “Coitus interruptus” | 73 (14%) | 19 (5%) |
| Vaginal ring, contraceptive patch | 18 (3%) | 9 (2%) |
| Natural family planning | 35 (7%) | 9 (2%) |
| Sterilization of partner | 9 (2%) | 7 (2%) |
| Depot progestin | 16 (3%) | 6 (2%) |
| Hormone implants | 10 (2%) | 5 (1%) |
| Diaphragm, cervical cap | 17 (3%) | 3 (1%) |
| Postcoital emergency contraception (“morning after pill”) | 35 (7%) | 0 |
⁎ Percentage of all women who ever had used a contraceptive method (n = 507).
† Percentage of women currently using a contraceptive method (n = 354).
A total of 173 patients (37%; missing data for 67) were regarded to have a contraindication for the use of COCs. Despite this, 34 of the patients with known absolute (n = 20) or relative (n = 14) contraindications were presently using COCs for contraception.
A total of 66 women (13%; missing data for 39) were estimated to be in the group with high pregnancy-related risks. Women >45 years of age or not living in a partnership during the study period were not considered at high risk of becoming pregnant and were excluded from this group, leaving 39 women. Table 3 lists an overview of which contraceptive methods were used by the women in this high-risk group.
| Contraceptive Method | Patients (n) † |
|---|---|
| Condom | 8 (20%) |
| Combined oral contraceptives | 7 (18%) |
| Intrauterine device | 4 (10%) |
| Coitus interruptus | 3 (8%) |
| Sterilization | 2 (5%) |
| Progestin-only pill | 2 (5%) |
| Sterilization of partner | 1 (3%) |
| Depot gestagens | 1 (3%) |
| Currently no contraception | 11 (28%) |
| Total | 39 |
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