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Adult CHD: the ongoing need for physician counselling about heredity and contraceptive options

Published online by Cambridge University Press:  07 July 2016

Camila Londono-Obregon ,
Elizabeth Goldmuntz ,
Brooke T. Davey ,
Xuemei Zhang ,
Gail B. Slap  and
Yuli Y. Kim
Camila Londono-Obregon
Affiliation:
Division of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Elizabeth Goldmuntz
Affiliation:
Division of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Brooke T. Davey
Affiliation:
Division of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Xuemei Zhang
Affiliation:
Biostatistics and Data Management Core, The Children’s Hospital of Philadelphia Research Institute, Philadelphia, Pennsylvania, United States of America
Gail B. Slap
Affiliation:
Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America Division of Adolescent Medicine, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Yuli Y. Kim*
Affiliation:
Division of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America Division of Cardiovascular Medicine, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania, United States of America Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
*
Correspondence to: Y. Y. Kim, MD, Assistant Professor, Department of Medicine, Philadelphia Adult Congenital Heart Center, Perelman Center for Advanced Medicine, 2nd floor East Pavilion, 3400 Civic Center Boulevard, Philadelphia, PA 19104, United States of America. Tel: +1 215 615 3388; Fax: +1 215 349 5927; E-mail: Yuli.Kim@uphs.upenn.edu
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Abstract

Purpose

Current guidelines recommend that patients with CHD receive age-appropriate counselling on reproduction, pregnancy, and risk of heredity. Our aim was to examine patient knowledge of reproductive health and explore the association between patient knowledge of CHD transmission risk and earlier physician counselling in adults with CHD.

Methods

We performed a cross-sectional survey of patients with CHD aged 18 years and older in a paediatric hospital.

Results

Of the 100 patients who completed the questionnaire, most did not report counselling on heredity (66%) or contraception (71%). Of the 54 women, 25 (46%) identified their contraceptive options correctly; 42 (78%) women were classified as being at significantly increased risk for an adverse outcome during pregnancy, and of these 20 (48%) identified this risk correctly. Of all patients surveyed, 72% did not know that having CHD placed them at increased risk for having a child with CHD. On multivariate analysis, factors associated with correct knowledge about risk of recurrence were correct identification of CHD diagnosis (p=0.04) and patient-reported counselling (p=0.001).

Conclusions

Knowledge about heredity, pregnancy risk, and contraceptive options is inadequate among adults with CHD followed-up in a paediatric subspecialty clinic. The majority of patients did not report a history of counselling about reproductive health. There is a strong correlation between history of counselling by the patient’s cardiologist and correct knowledge about recurrence risk, suggesting that effective reproductive counselling can positively impact this knowledge gap.

Keywords

reproductive healthhereditycounselling
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 4 , May 2017 , pp. 671 - 676
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Copyright
© Cambridge University Press 2016 

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References

1. Roger, VL, Go, AS, Lloyd-Jones, DM, et al. Executive summary: heart disease and stroke statistics – 2012 update: a report from the American Heart Association. Circulation 2012; 125: 188–197.Google Scholar
2. van der Bom, T, Zomer, AC, Zwinderman, AH, Meijboom, FJ, Bouma, BJ, Mulder, BJ. The changing epidemiology of congenital heart disease. Nat Rev Cardiol 2011; 8: 50–60.Google Scholar
3. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
4. Warnes, CA, Williams, RG, Bashore, TM, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association task force on practice guidelines (writing committee to develop guidelines on the management of adults with congenital heart disease). Circulation 2008; 118: e714–e833.Google Scholar
5. Vigl, M, Kaemmerer, M, Seifert-Klauss, V, et al. Contraception in women with congenital heart disease. Am J Cardiol 2010; 106: 1317–1321.Google Scholar
6. Uebing, A, Steer, PJ, Yentis, SM, Gatzoulis, MA. Pregnancy and congenital heart disease. BMJ 2006; 332: 401–406.Google Scholar
7. Thorne, S, MacGregor, A, Nelson-Piercy, C. Risks of contraception and pregnancy in heart disease. Heart 2006; 92: 1520–1525.Google Scholar
8. Silversides, CK, Sermer, M, Siu, SC. Choosing the best contraceptive method for the adult with congenital heart disease. Curr Cardiol Rep 2009; 11: 298–305.Google Scholar
9. Marelli, A, Beauchesne, L, Mital, S, Therrien, J, Silversides, CK. Canadian cardiovascular society 2009 consensus conference on the management of adults with congenital heart disease: introduction. Can J Cardiol 2010; 26: e65–e69.CrossRefGoogle Scholar
10. Hargrove, A, Penny, DJ, Sawyer, SM. Sexual and reproductive health in young people with congenital heart disease: a systematic review of the literature. Pediatr Cardiol 2005; 26: 805–811.Google Scholar
11. Van Deyk, K, Pelgrims, E, Troost, E, et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 2010; 106: 1803–1807.Google Scholar
12. van Engelen, K, Baars, MJ, van Rongen, LT, van der Velde, ET, Mulder, BJ, Smets, EM. Adults with congenital heart disease: patients’ knowledge and concerns about inheritance. Am J Med Genet A 2011; 155A: 1661–1667.Google Scholar
13. Eaton, DK, Kann, L, Kinchen, S, et al. Youth risk behavior surveillance – United States, 2009. MMWR Surveill Summ 2010; 59: 1–142.Google Scholar
14. Regitz-Zagrosek, V, Blomstrom Lundqvist, C, Borghi, C, et al. ESC guidelines on the management of cardiovascular diseases during pregnancy: the task force on the management of cardiovascular diseases during pregnancy of the European Society of Cardiology (ESC). Eur Heart J 2011; 32: 3147–3197.Google Scholar
15. Harris, PA, Taylor, R, Thielke, R, Payne, J, Gonzalez, N, Conde, JG. Research electronic data capture (REDCap) – a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377–381.Google Scholar
16. Kaemmerer, M, Vigl, M, Seifert-Klauss, V, et al. Counseling reproductive health issues in women with congenital heart disease. Clin Res Cardiol 2012; 101: 901–907.Google Scholar
17. Hinze, A, Kutty, S, Sayles, H, Sandene, EK, Meza, J, Kugler, JD. Reproductive and contraceptive counseling received by adult women with congenital heart disease: a risk-based analysis. Congenit Heart Dis 2013; 8: 20–31.Google Scholar
18. Kovacs, AH, Harrison, JL, Colman, JM, Sermer, M, Siu, SC, Silversides, CK. Pregnancy and contraception in congenital heart disease: what women are not told. J Am Coll Cardiol 2008; 52: 577–578.Google Scholar
19. Wang, Q, Hay, M, Clarke, D, Menahem, S. Associations between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health-related quality of life in an ambulatory sample of adolescents with heart disease. Cardiol Young 2014; 24: 126–133.Google Scholar
20. Foster, E, Graham, TP Jr, Driscoll, DJ, et al. Task force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1176–1183.Google Scholar
21. Rogers, P, Mansour, D, Mattinson, A, O’Sullivan, JJ. A collaborative clinic between contraception and sexual health services and an adult congenital heart disease clinic. J Fam Plann Reprod Health Care 2007; 33: 17–21.Google Scholar
22. van Engelen, K, Baars, MJ, Felix, JP, Postma, AV, Mulder, BJ, Smets, EM. The value of the clinical geneticist caring for adults with congenital heart disease: diagnostic yield and patients’ perspective. Am J Med Genet A 2013; 161A: 1628–1637.CrossRefGoogle ScholarPubMed