Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial: HEART-ACHD)

Anne Marie Valente, Michael J. Landzberg, Ann Gianola, Amy J. Harmon, Stephen Cook, Jennifer G. Ting, Karen Stout, Karen Kuehl, Paul Khairy, Joseph D. Kay, Michael Earing, Linda Houser, Craig Broberg, Carly Milliren, Alexander R. Opotowsky, Gary Webb, Amy Verstappen, Michelle Gurvitz

Research output: Contribution to journalArticlepeer-review

21 Scopus citations


Objective The objective of this prospective multi-center study was to evaluate heart disease knowledge within the adult congenital heart disease (ACHD) population, pilot an educational intervention and assess interest in research participation among new patients at ACHD clinics. Background Many adults with congenital heart disease lack knowledge about their heart condition that may contribute to undesirable outcomes. Methods Patients ≥ 18 years of age were recruited upon their first presentation to an ACHD clinic and underwent an educational intervention consisting of creation of a personal health information 'passport' and an introduction to web-based resources. Subjects were asked to complete initial and follow-up surveys documenting their perceived knowledge. Results Nine hundred twenty-two subjects were recruited from 12 ACHD centers, and 520 (57%) completed follow-up surveys. Patients who completed the follow-up survey were more likely to be women, have more education, and have mild heart disease. At follow-up, the ability of the subjects to name their heart condition improved (78% to 83%, p = 0.002). Improvements were seen in mean Likert items regarding perceived knowledge of appropriate exercise (p < 0.0001), symptoms of heart rhythm problems or endocarditis (p < 0.0001), reasons for cardiac tests (p < 0.007), and birth control options and pregnancy safety (p < 0.0001). On follow-up, subjects reported a better understanding of medical research (p < 0.01), and higher interest in research participation (p < 0.003). Conclusion This joint clinician-patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population.

Original languageEnglish (US)
Pages (from-to)3236-3240
Number of pages5
JournalInternational Journal of Cardiology
Issue number4
StatePublished - Oct 9 2013


  • Adult congenital heart disease
  • Congenital heart disease
  • Patient education
  • Patient knowledge

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


Dive into the research topics of 'Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial: HEART-ACHD)'. Together they form a unique fingerprint.

Cite this