Aktuelle Studien

Heart. 2009 Jul;95(14):1179-83. Epub 2009 Apr 12.

Sexuality and subjective wellbeing in male patients with congenital heart disease

Vigl M, Hager A, Bauer U, Niggemeyer E, Wittstock B, Köhn FM, Hess J, Kaemmerer H.
Contact: Competence Network for Congenital Heart Defects, 13353 Berlin, Germany

OBJECTIVE: To assess physical and psychological concerns related to sexuality, the prevalence of erectile dysfunction and their relationship to patients' quality of life.
DESIGN: Questionnaire-based survey.
SETTING: Tertiary care centre.
PATIENTS: Consecutive sample of 332 men with congenital heart disease (age 18-59 years; median 23).
MAIN OUTCOME MEASURES: Besides various components concerning sexuality, the International Index of Erectile Function, a generic health-related quality-of-life instrument (SF-12) and a depression scale (ADS) were included.
RESULTS: Men under the age of 40 engage less frequently in sexual relationships than their peers from the general population. Fears before or during sexual intercourse (9.9%), as well as physical symptoms such as dyspnoea (9.0%), feelings of arrhythmia (9.0%) or chest pain (5.1%) are common. 10.0% reached a score on the International Index of Erectile Function indicative of an erectile dysfunction. Men with erectile dysfunction scored significantly worse on the SF-12 mental (43.5 vs 51.8, p<0.001) as well as on the physical sum scale (46.3 vs 52.6, p = 0.002) than patients without erectile problems. Additionally, in the group of men without erectile dysfunction only 3.2% showed signs of depressive symptoms, whereas among men with erectile dysfunction this figure increased to 33.3% (p<0.001)
CONCLUSIONS: The concern of sexuality should be integrated into the regular consultations of these patients. The strong association between sexual health and subjective wellbeing emphasises the need for diagnosis and, if necessary, treatment of these problems.

Am J Cardiol. 2010 Feb 15;105(4):538-41.

Sexuality and reproductive health in women with congenital heart disease

Vigl M, Kaemmerer M, Niggemeyer E, Nagdyman N, Seifert-Klauss V, Trigas V, Bauer U, Schneider KT, Berger F, Hess J, Kaemmerer H.
Contact: Competence Network for Congenital Heart Defects, Deutsches Herzzentrum Berlin, Berlin, Germany

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.

Copyright 2010 Elsevier Inc. All rights reserved.

Int J Cardiol. 2008 Apr 25;125(3):332-8. Epub 2007 Apr 17

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

Reid GJ, Siu SC, McCrindle BW, Irvine MJ, Webb GD.
Contact: Department of Psychology, The University of Western Ontario, Canada

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.

Pediatr Cardiol. 2005 Nov-Dec;26(6):805-11

Sexual and reproductive health in young people with congenital heart disease: a systematic review of the literature

Hargrove A, Penny DJ, Sawyer SM.
Contact: Centre for Adolescent Health, Royal Children's Hospital, Flemington Rd, Parkville, Victoria, 3052, Australia.

BACKGROUND: Improved survival in young people with congenital heart disease (CHD) alters the significance of a range of developmentally important subjects, such as sexual and reproductive health. The aim of this study was to determine the level of knowledge about sexual and reproductive health issue in young people with CHD.
METHODS: We undertook a systematic review of the literature from 1966 to March 2004, searching Medline, Psych Info, and Em base using a broad range of search terms. Additionally, we searched the literature for published guidelines on standards of care for young people with CHD.
RESULTS: We identified ten articles that examined patients,' understanding of their heart disease. Seven of them specifically investigated knowledge of sexual and reproductive health as it related to cardiac disease.
CONCLUSIONS: In general, young people have a poor understanding of their heart disease. They appear to have a particularly poor grasp of sexual and reproductive health issues, yet they are interested in these issues. Therefore, health care programs for young people with CHD should incorporate sexual and reproductive health information and include anticipatory counseling and health risk screening.

J Fam Plann Reprod Health Care. 2007 Jan;33(1):17-21

A collaborative clinic between contraception and sexual health services and an adult congenital heart disease clinic

Rogers P, Mansour D, Mattinson A, O'Sullivan JJ.
Contact: Department of Contraception and Sexual Health, Graingerville Clinic, Newcastle General Hospital, Newcastle-upon-Tyne, UK. paularogers@doctors.org.uk

BACKGROUND: The success of cardiac surgery has created a new group of patients: those with 'adult congenital heart disease' (CHD) who may need specialist advice about contraception and pregnancy. The study objective was to investigate whether women with CHD were receiving appropriate advice on contraception.
METHODS: The study setting comprised a combined adult CHD and contraception and sexual health clinic operating alongside each other, once a month, at Freeman Hospital, Newcastle-upon-Tyne, UK. Data were collected on 46 consecutive female patients attending the clinic between April 2002 and October 2003.
RESULTS: Sixteen of the 46 (35%) women had never discussed contraception with a health professional. Nine of these women were sexually active and were using condoms. Seven of these women chose to start hormonal contraception following consultation. Ten of the 30 (33%) women who had previously discussed contraception with either their general practitioner or family planning clinic had received inappropriate advice. Of these 30 women, 24 needed contraception: 12 (50%) continued with their current method, 10 (42%) started hormonal contraception having previously used either condoms or no contraception and two (8%) changed their current hormonal method to a more effective long-term method (progestogen-only pill to progestogen implant). There had been eight unplanned pregnancies in seven patients. There was poor knowledge among the women about long-acting hormonal methods, particularly progestogen injectables and implants.
CONCLUSIONS: Our experience has highlighted the substandard provision of sexual health services for adults with CHD. Many of these women receive either no advice or inappropriate advice about contraception. Suitable effective reversible methods are often denied by health professionals who are concerned about the safety of hormonal contraceptives in women with 'heart problems'. Preconception advice and birth control information should be given to all female patients with CHD, as correct information will avoid the potential risks of an unplanned pregnancy. A monthly regional combined clinic staffed by a cardiologist and family planning doctor provides the ideal opportunity for education of patients and health professionals alike. Good practice is then disseminated across specialities and into the community, encouraging multidisciplinary guidelines and pathways of referral to be developed.

J Adolesc Health. 2006 Jul;39(1):121-4

Transition to adulthood in congenital heart disease: missed adolescent milestones

Lyon ME, Kuehl K, McCarter R.
Contact: Division of Adolescent and Young Adult Medicine, Center for Cancer and Immunology Research, Children's National Medical Center and George Washington University School of Medicine and Health Science, Washington, DC 20010-2970, USA. mlyon@cnmc.org

PURPOSE: To determine whether adults with congenital heart disease (CHD) are better adjusted than adults with acquired heart disease (AHD).
METHODS: Twenty-five adults with CHD completed the Patient Adjustment to Illness Self Report (PAIS-SR).
RESULTS: CHD patients had good adjustment for Heath Care Orientation and Family Relations, but poorer adjustment for Vocational, Social and Domestic Environment, Sexual Relations, and Psychological Distress.
CONCLUSIONS: The needs of CHD patients are not being met.