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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: [email protected]
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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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