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

Int J Cardiol. 2013 Oct 9;168(4):3236-40. doi: 10.1016/j.ijcard.2013.04.004. Epub 2013 May 4.


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.

Keywords: Adult congenital heart disease; Congenital heart disease; Patient education; Patient knowledge.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Cross-Sectional Studies
  • Data Collection / methods*
  • Female
  • Follow-Up Studies
  • Health Knowledge, Attitudes, Practice*
  • Heart Defects, Congenital / diagnosis
  • Heart Defects, Congenital / epidemiology*
  • Heart Defects, Congenital / therapy
  • Heart Diseases / diagnosis
  • Heart Diseases / epidemiology
  • Heart Diseases / therapy
  • Humans
  • Longitudinal Studies
  • Male
  • Patient Education as Topic / methods*
  • Patient Participation / methods*
  • Pilot Projects
  • Prospective Studies