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).
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
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to International Journal of CardiologyAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Health care resource utilization in adults with congenital heart disease.Am J Cardiol. 2007; 99: 839-843
- Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood.J Am Coll Cardiol. 2007; 49: 875-882
- Trends in hospitalizations for adults with congenital heart disease in the U.S..J Am Coll Cardiol. 2009; 54: 460-467
- Children and adults with congenital heart disease lost to follow-up: who and when?.Circulation. 2009; 120: 302-309
- Adult congenital heart disease: new challenges.Int J Cardiol. 2012; 163: 105-107
- Congenital heart disease in the general population: changing prevalence and age distribution.Circulation. 2007; 115: 163-172
- Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association.Circulation. 2011; 123: 1454-1485
- What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education.Heart. 2001; 86: 74-80
- Parental knowledge regarding lifelong congenital cardiac care.Pediatrics. 2011; 128: e1489-e1495
- Illness understanding in adults with congenital heart disease.Ital Heart J. 2005; 6: 895-899
- Lapse of care as a predictor for morbidity in adults with congenital heart disease.Int J Cardiol. 2008; 125: 62-65
- Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines; an epidemiologic approach.Am Heart J. 2009; 157: 1-8
- Clinical research trials: factors that influence and hinder participation.J Cult Divers. 2007; 14: 141-147
- Multicenter research in adult congenital heart disease.Int J Cardiol. 2008; 129: 155-159
- The perspective of patients with congenital heart disease: does health care meet their needs?.Congenit Heart Dis. 2011; 6: 219-227
- Pregnancy and contraception in congenital heart disease: what women are not told.J Am Coll Cardiol. 2008; 52: 577-578
- Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial).J Am Coll Cardiol. 2013 May 28; 61: 2180-2184
- Task force 1: the changing profile of congenital heart disease in adult life.J Am Coll Cardiol. 2001; 37: 1170-1175
- Sudden unexpected death after balloon valvuloplasty for congenital aortic stenosis.J Am Coll Cardiol. 2010; 56: 1939-1946
- A shift from underweight to overweight and obesity in Asian children and adolescents with congenital heart disease.Paediatr Perinat Epidemiol. 2012; 26: 336-343
- Stress-induced heart symptoms and perceptual biases in patients with congenital heart disease.Int J Cardiol. 2007; 114: 352-357
- ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines on the management of adults with congenital heart disease).Circulation. 2008; 118: e714-e833
- Congenital heart surgery databases around the world: do we need a global database?.Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010; 13: 3-19
Article info
Publication history
Published online: May 06, 2013
Accepted:
April 4,
2013
Received in revised form:
March 18,
2013
Received:
December 18,
2012
Footnotes
☆Funding sources: National Institutes of Health/NHLBI R03HL096135.
☆☆Disclosures: This project was supported by Award Number R03HL096135 from the National Heart, Lung and Blood Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Heart, Lung and Blood Institute of the National Institutes of Health.
Identification
Copyright
© 2013 Elsevier Ireland Ltd. Published by Elsevier Inc. All rights reserved.
