Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease

doi:10.1016/j.ijcard.2007.02.040

International Journal of Cardiology

Volume 125, Issue 3, 25 April 2008, Pages 332-338

https://doi.org/10.1016/j.ijcard.2007.02.040 Get rights and content

Abstract

Objectives

To examine the sexual behaviors and reproductive concerns among patients with moderate to complex congenital heart disease (CHD).

Background

There is a growing need to understand and address the psychosocial issues for older adolescents and young adults with CHD. Emerging sexuality is an issue for this age group and pregnancy for many women with CHD is risky. But, patients' sexual behavior and reproductive concerns have not been studied.

Methods

Young adults (19–20 years old; n = 212) and adolescents (16–18 years old; n = 144) with moderate to complex CHD reported their sexual behaviors and reproductive concerns. Data were compared to normative samples from Canada and the United States.

Results

Few adolescents (14%) but many young adults (48%) with CHD were sexually active (at least one partner in the previous 3 months). These rates were lower than those of their healthy peers. Among the sexually active patients, 36% of the young adults and 72% of the adolescents engaged in one or more types of potentially risky sexual behavior (i.e., two or more partners in the past 3 months, questionable birth control, using drugs or alcohol before sex at least sometimes). Women with complex CHD had the highest levels of concern regarding their fertility and risk of genetic transmission of CHD, as well as concerns about adverse effects of pregnancy on their own health.

Conclusions

Sexual health should be discussed with adolescents and young adults with CHD. Particular attention should be given to discussing sexual health with women who have complex CHD.

Introduction

The number of children with moderate or complex congenital heart disease (CHD) that live to adulthood is increasing [1]. As such, there is a growing need to understand and address the psychosocial issues among these older adolescents and young adults [2]. Pregnancy carries risks for women and their children, and planning for pregnancy is highly recommended [3], [4], [5], [6]. Thus, sexual practices and contraception are relevant issues among adolescents and young adults with CHD. Most young women with CHD know about pregnancy risks and contraception [7] but many patients feel they do not have enough information about family planning [8]. The frequency with which adolescents and young adults with CHD engage in potentially risky sexual behaviors, and their concerns related to reproductive issues, have not been examined.

The present study aimed to document the sexual practices, with a particular focus on potentially risky sexual behaviors, among adolescents and young adults with CHD; and to compare rates of risky sexual behaviors in this population to norms from comparison samples of adolescents and young adults in the general population. Correlates of risky sexual behavior were also explored. Finally, the reproductive concerns among adolescents and young adults with CHD were examined.

Section snippets

CHD patients: Description and data collection

Two cohorts of patients with CHD recommended to receive annual follow-up at a specialized adult CHD clinic based on consensus criteria [1], [9] were identified from the cardiac clinic database at the Hospital for Sick Children (HSC), the largest pediatric cardiac center in Canada: (a) a young adult (age 19 or 20 years) cohort (born between 1-June-1978 and 31-May-1980), and (b) an older adolescents (age 16–18 years old) cohort (born between 1-April-1982 and 31-March-1984). The cohorts were

Description of patient sample

Patients were age: 16 (n = 31, 10%), 17 (n = 64; 20%), 18 (n = 32; 10%), 19 (n = 99; 31%), or 20 years (n = 95; 29%). Half were men and the majority (80%) lived with their parents. Patients had undergone an average of 1.8 ± 1.6 surgeries. The most common primary diagnosis for each patient, as determined (by GDW), was: Tetralogy of Fallot, 17%; Coarctation of aorta, 12%; Atrio-ventricular septal defect, 10%; Fontan procedure, 10%; left ventricular outflow tract obstruction, 9%; Atrial Septal Defect with

Rates of sexual activity

Overall fewer adolescents and young adults with CHD were sexually active compared to normative samples from the United States and Canada. In contrast, two large school-based surveys of adolescents found no differences in sexual behavior between adolescents from the U.S. with a variety of visible chronic illnesses (e.g., cerebral palsy, arthritis) or non-visible chronic illnesses (e.g., diabetes, asthma, seizure) vs. controls [20], and a study from Spain found higher rates of sexual behaviors

Acknowledgements

This study was supported by a grant from the Hospital for Sick Children Foundation (#XG95-017). G.J. Reid was supported as the Bill and Anne Brock Professor in Child Health at the time this manuscript was written. The authors acknowledge the assistance of Tamara Blitz-Miller, who was the research assistant working with patients with congenital heart disease, Katherine Zavitz and Laurie David, who assisted with data collection with the undergraduate sample, and Fredrick Phillip who assisted with

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Sexual Health and Well-Being in Adults With Congenital Heart Disease: A International Society of Adult Congenital Heart Disease Statement
2023, JACC: Advances
As health care outcomes improve the priority for those living with adult congenital heart disease have changed to a more holistic focus on quality of life and well-being. Although health care has embraced this, there are still areas where there is a deficit in advice, allyship, and advocacy. One of these deficits is in the area of sexual health and well-being. A healthy sexual life has a myriad of physical and psychosocial benefits. However, individuals with adult congenital heart disease may have significant barriers to achieving well-being in this aspect of their lives. These barriers and their potential solutions are outlined in this paper.
Characteristics and outcomes of socioeconomically disadvantaged pregnant individuals with adult congenital heart disease presenting to a Cardio-Obstetrics Program
2023, American Journal of Obstetrics and Gynecology MFM
Outcomes of individuals with adult congenital heart disease who are socioeconomically disadvantaged and cared for in cardio-obstetrical programs, are lacking.
This study aimed to describe the clinical characteristics, maternal pregnancy outcomes, and contraceptive uptake in individuals with adult congenital heart disease in an urban cardio-obstetrical program.
Retrospective data were collected for individuals with adult congenital heart disease seen in the Maternal Fetal Medicine-Cardiology Joint Program at Montefiore Health System between 2015 and 2021 and compared using modified World Health Organization class I, II vs the modified World Health Organization class ≥II/III.
Over 90% of individuals with adult congenital heart disease were pregnant at the time of referral. Modified World Health Organization class I, II (n=77, 62.4% Black or Hispanic/Latina) had a total of 94 pregnancies and modified World Health Organization class ≥II/III (n=49, 49.0% Black or Hispanic/Latina) had a total of 56 pregnancies. Over 25% of individuals in each group had a body mass index ≥30 (P=.78), and very low summary socioeconomic scores. Modified World Health Organization class ≥II/III were more likely to be anticoagulated in the first trimester than modified World Health Organization class I, II (10.7% vs 0.0%, P=.002) and throughout pregnancy (14.3% vs 3.2% P=.02). Modified World Health Organization class ≥II/III were more likely to require arterial monitoring during delivery than modified World Health Organization class I, II (14.3% vs 0.0%, P=.001) or delivery under general anesthesia (8.9% vs 1.1%, P=.03) but had a comparable frequency of cesarean delivery (35.8% vs 41.3%, P=.68). There were no in-hospital maternal deaths. There was no difference in the type of contraception recommended by modified World Health Organization class, however, modified World Health Organization class ≥II/III were more likely to receive long-acting types or permanent sterilization (35.6% vs 54.6%, P=.045).
In a socioeconomically disadvantaged cohort with adult congenital heart disease from a historically marginalized community, those with modified World Health Organization class ≥II/III had more complex antepartum and intrapartum needs but similar maternal and obstetrical outcomes as modified World Health Organization class I, II. The multidisciplinary approach offered by a cardio-obstetrics program may contribute to successful outcomes in this high-risk cohort, and these data are hypothesis-generating.
Congenital heart disease and the risk of impaired fertility: A Danish nationwide cohort study using time to pregnancy
2023, International Journal of Cardiology
The number of women with congenital heart disease (CHD) becoming pregnant are increasing. Although menstrual irregularities appear to occur more often in these patients, knowledge on their fertility is limited. In this nationwide cohort study, we evaluated the risk of impaired fertility in women with CHD compared with unaffected women using time to pregnancy (TTP).
The Danish National Birth Cohort (DNBC) of pregnant women constituted the study population. Information on TTP and use of medically assisted reproduction (MAR) treatment was reported at a first trimester interview. Women with CHD were identified by linkage to the Danish National Patient Registry. TTP was divided into three categories; 0–5 months, 6–12 months (i.e. subfertile), and > 12 months or use of MAR treatment (i.e. infertile). Relative risk ratios (RRR) for subfertility and infertility with 95% confidence intervals were estimated using multinomial logistic regression.
Among 93,832 pregnancies in 84,922 women, CHD was diagnosed in 333 women (0.4%), contributing with 360 pregnancies. The CHD was of simple complexity in 291 women (87.4%). No association was found between CHD and longer TTP (RRR of 1.02 (95% CI: 0.75–1.40) for subfertility, and RRR of 0.86 (95% CI: 0.61–1.20) for infertility). Similar was observed when comparing women with simple CHD and unaffected women. The number of women with complex CHD was too low for evaluation.
Women with CHD had no increased risk of impaired fertility, assessed by TTP, when compared with unaffected women. Separate analysis of women with complex CHD was hampered by low numbers.
Adolescent Women with Congenital Heart Disease: Self-Reported Reproductive Health Discussions with Health Care Providers
2022, Journal of Pediatric and Adolescent Gynecology
This study evaluated self-reported discussions with health care providers (HCPs) among adolescent and young adult (AYA) women with congenital heart disease (CHD).
Data were collected through a one-time survey of AYA women.
Participants were recruited from pediatric cardiology clinics.
AYA women with CHD, ages 14-21 (N = 107)
None
Questionnaires assessed adolescent characteristics and specific HCP discussions regarding transmissibility of a cardiac condition to the infant, risk of pregnancy, and hormonal contraception. Outcome measures were self-reported discussions with HCPs about these reproductive health topics.
Mean age was 16.8 years (SD = 2.1). Self-reported reproductive health discussions were infrequent, including discussions on transmissibility of a heart condition to their offspring (37%), risk of pregnancy to their offspring (34%), risks of pregnancy to their health (46%), and risks of hormonal contraception given their heart condition (21%). Reported discussions were most commonly with a cardiologist.
AYA women with CHD reported limited discussions about reproductive health topics important to those with CHD. Lack of appropriate and timely counseling could lead to poor maternal and child health outcomes. Targeted interventions that improve reproductive health discussions between HCPs and AYA women with CHD are needed to close critical information and service gaps.
Menstrual Dysfunction and Treatment Among Adolescents With Congenital Heart Disease
2020, Journal of Pediatric and Adolescent Gynecology
This study describes menstrual dysfunction and treatment among adolescent and young adult (AYA) females with congenital heart disease (CHD).
Data collected from a 1-time survey completed by AYA females (and mothers if AYA unable).
Participants were recruited from pediatric cardiology clinics.
Female AYA with CHD, aged 14-21 years (N = 114).
None.
The questionnaire assessed sexual and reproductive health (SRH) concerns, behaviors, and management. Outcome measures were self-reported menstrual complaints, use of over-the-counter (OTC) pain relief medications for dysmenorrhea, reported visits with a clinician for a menstrual problem, and reported use of hormones for menstrual problems or birth control.
Mean age was 17.0 years (SD = 2.2). The majority of participants (83%) reported 1 or more menstrual complaints (67.5% cramping, 42.1% irregular menses, 46.5% heavy periods), and 88% reported any history of taking OTC medications for pain relief. Increased menstrual complaints were not associated with level of cardiac complexity, reported transplantation, or reported use of hormonal contraception. However, 32% of participants reported use of hormonal contraception for menstrual dysfunction. Combined oral contraceptive pills (COCs) were the most common; 2 of these women carried contraindications to estrogen.
A large majority of AYA females with CHD reported menstrual dysfunction. Use of OTC medication for menstrual pain and inappropriate use of estrogen creates concerns that menstrual disorders may be unaddressed or addressed inappropriately. Thus, gynecological needs of adolescents with CHD may need to be specifically targeted by providers who feel comfortable with this population and their complex needs.
Congenital Heart Disease and Women's Health Across the Life Span: Focus on Reproductive Issues
2019, Canadian Journal of Cardiology
From adolescence to older age, women with congenital heart disease (CHD) face unique challenges. In this review we explore the ways in which CHD affects women’s sexual and reproductive health and, in turn, how their sexual and reproductive history affects the course of their CHD. In adolescence, special attention must be paid to menstrual irregularities and concerns of developing sexuality and self-image. Discussions about sexuality and reproduction are an important part of transition planning and must be done with an awareness of the adolescent’s developing understanding and maturity. Pregnancy imposes a hemodynamic load on the heart which may lead to cardiac, obstetric, and fetal/neonatal complications in women with CHD. Prepregnancy counselling must include an assessment of maternal and fetal risk according to several well developed models. Counselling should also include discussions about fertility and alternatives to pregnancy when appropriate. Recommendations for contraception must be made according to the patient’s cardiac lesion. In caring for women with CHD during pregnancy, a multidisciplinary cardio-obstetrics team is recommended to optimize care. More research is needed into the long-term impact of pregnancy on the prognosis of patients with CHD. As women with CHD increasingly survive into old age, more attention will need to be directed toward the treatment of menopause and acquired heart disease in this population.
De l’adolescence à un âge plus avancé, les femmes atteintes d’une cardiopathie congénitale font face à des défis uniques. Nous explorons ici les répercussions de la cardiopathie congénitale sur la santé des femmes en matière de sexualité et de reproduction et, inversement, les répercussions des antécédents des femmes en matière de sexualité et de reproduction sur la cardiopathie congénitale. À l’adolescence, il faut accorder une attention particulière à l’irrégularité du cycle menstruel et aux questions relatives à la sexualité et à l’image de soi en développement. Des discussions au sujet de la sexualité et de la reproduction constituent un volet important de la planification de la transition et doivent tenir compte du degré de compréhension et de maturité de l’adolescente. La grossesse impose un fardeau hémodynamique au cœur et peut mener à des complications cardiaques, obstétricales et fœtales/néonatales chez les femmes atteintes d’une cardiopathie congénitale. Le counselling préalable à la conception doit comprendre une évaluation des risques pour la mère et pour l’enfant fondée sur plusieurs modèles bien établis. Il doit aussi comprendre des discussions sur la fertilité et sur les solutions de rechange à la conception, s’il y a lieu. Des recommandations quant à la contraception doivent être formulées en fonction des lésions cardiaques de la patiente. Afin d’optimiser les soins, on recommande de confier la patiente atteinte d’une cardiopathie congénitale aux soins d’une équipe multidisciplinaire formée de spécialistes en cardiologie et en obstétrique durant la grossesse. D’autres recherches s’imposent pour examiner le retentissement à long terme d’une grossesse sur le pronostic des patientes atteintes d’une cardiopathie congénitale. Comme les femmes atteintes d’une cardiopathie congénitale vivent de plus en plus longtemps, il faudra également accorder plus d’attention au traitement des symptômes de la ménopause et des maladies cardiaques acquises au sein de cette population.

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Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease

Abstract

Objectives

Background

Methods

Results

Conclusions

Introduction

Section snippets

CHD patients: Description and data collection

Description of patient sample

Rates of sexual activity

Acknowledgements

J Am Coll Cardiol

Am Heart J

J Am Coll Cardiol

J Adolesc Health

Int J Cardiol

Am J Prev Med

J Adolesc Health

Lancet

Lancet

J Pediatr Nurs

Risk and predictors for pregnancy-related complications in women with heart disease

Circulation

Prospective multicenter study of pregnancy outcomes in women with heart disease

Circulation

Adverse neonatal and cardiac outcomes are more common in pregnant women with cardiac disease

Circulation

What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education

Heart

Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart disease

Cardiol Young

CCS Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I

Can J Cardiol

Youth risk behavior surveillance: National college health risk behavior survey— United States