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

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

Research output: Contribution to journalArticlepeer-review

8 Scopus citations


Objective: To investigate the experiences and communication preferences of adult patients with congenital heart disease (CHD) in the domains of employment, insurance, 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 quarter 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 educational curriculum for adolescents during the process of transition to adult care.

Original languageEnglish (US)
Pages (from-to)534-540
Number of pages7
JournalCongenital Heart Disease
Issue number4
StatePublished - 2019


  • adult congenital heart disease
  • communication
  • employment
  • family planning
  • health insurance

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Surgery
  • Radiology Nuclear Medicine and imaging
  • Cardiology and Cardiovascular Medicine


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