@Article{chd.12778,
AUTHOR = {Lisa X. Deng, Lacey P. Gleason, Katherine Awh, Abigail May Khan, David Drajpuch, Stephanie Fuller, Leah A. Goldberg, Christopher E. Mascio, Sara L. Partington, Lynda Tobin, Adrienne H. Kovacs, Yuli Y. Kim},
TITLE = {Too little too late? Communication with patients with congenital heart disease about challenges of adult life},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {14},
YEAR = {2019},
NUMBER = {4},
PAGES = {534--540},
URL = {http://www.techscience.com/schd/v14n4/39291},
ISSN = {3071-1738},
ABSTRACT = {<b>Objective:</b> 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.<br/>
<b>Design:</b> Patients ≥ 18 years of age completed a questionnaire about experiences 
and communication preferences regarding employment, health insurance, and family 
planning.<br/>
<b>Results:</b> 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.<br/>
<b>Conclusions:</b> 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.},
DOI = {10.1111/chd.12778}
}