Open Access

ARTICLE

Too little too late? Communication with patients with congenital heart disease about challenges of adult life

Lisa X. Deng¹, Lacey P. Gleason², Katherine Awh², Abigail May Khan³, David Drajpuch^2,4, Stephanie Fuller⁵, Leah A. Goldberg², Christopher E. Mascio⁵, Sara L. Partington^2,4, Lynda Tobin^2,4, Adrienne H. Kovacs³, Yuli Y. Kim^2,4

1 Department of Medicine, University of California, San Francisco, San Francisco, California
2 Division of Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
3 Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon
4 Division of Cardiovascular Medicine, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania
5 Division of Cardiothoracic Surgery, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

* Corresponding Author: Yuli Y. Kim, MD, Philadelphia Adult Congenital Heart Center, Penn Medicine and The Children’s Hospital of Philadelphia, 3400 Civic Center Boulevard, Perelman Center for Advanced Medicine, 2nd floor East Pavilion, Philadelphia, PA 19104‐5127. Email:

Congenital Heart Disease 2019, 14(4), 534-540. https://doi.org/10.1111/chd.12778

Abstract

Objective: To investigate the experiences and communication preferences of adult patients with congenital heart disease (CHD) in the domains of employment, insur‐ ance, and family planning.
Design: Patients ≥ 18 years of age completed a questionnaire about experiences and communication preferences regarding employment, health insurance, and family planning.
Results: Of 152 patients (median age = 33 years, 50% female, 35% with CHD of great complexity), one in four reported work‐related problems due to CHD and a quar‐ ter also recalled a previous gap in health insurance. Of females, 29% experienced an unplanned pregnancy. The median importance of discussion ratings (on a 0‐10 scale) were 3.5 (employment), 6.0 (insurance), and 8.0 (family planning). Few patients recalled discussions about employment (19%) or health insurance (20%). Over half recalled discussions about family planning, although males were less likely to have had these discussions than females (24% vs 86%, P < .001). Across the three domains, patients identified 16‐18 years as the most appropriate age to initiate discussion, although for patients who recalled discussions, they typically occurred between 20 and 25 years.
Conclusions: Adults with CHD commonly face employment, health insurance, and family planning challenges. However, discussions about these matters occur with less frequency than recommended and at older ages than patients would prefer. Communication about such issues should be incorporated into a comprehensive edu‐ cational curriculum for adolescents during the process of transition to adult care.

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