title: Improving heart disease knowledge and research participation in adults with congenital heart disease (the Health, Education and Access Research Trial: HEART-ACHD).
abstract: 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).
  
  
  CONCLUSIONS
  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.
authors: Boston Adult Congenital Heart Program, Department of Cardiology, Boston Children's Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA, USA. Electronic address: anne.valente@cardio.chboston.org.
authors: Anne Marie
authors: AM
authors: Valente
authors: Michael J
authors: MJ
authors: Landzberg
authors: Ann
authors: A
authors: Gianola
authors: Amy J
authors: AJ
authors: Harmon
authors: Stephen
authors: S
authors: Cook
authors: Jennifer G
authors: JG
authors: Ting
authors: Karen
authors: K
authors: Stout
authors: Karen
authors: K
authors: Kuehl
authors: Paul
authors: P
authors: Khairy
authors: Joseph D
authors: JD
authors: Kay
authors: Michael
authors: M
authors: Earing
authors: Linda
authors: L
authors: Houser
authors: Craig
authors: C
authors: Broberg
authors: Carly
authors: C
authors: Milliren
authors: Alexander R
authors: AR
authors: Opotowsky
authors: Gary
authors: G
authors: Webb
authors: Amy
authors: A
authors: Verstappen
authors: Michelle
authors: M
authors: Gurvitz
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D003625:Data Collection / Q000379:methods*; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D006331:Heart Diseases / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation / Q000379:methods*; D010865:Pilot Projects; D011446:Prospective Studies
keywords: Adult congenital heart disease; Congenital heart disease; Patient education; Patient knowledge