HEART-ACHD Study

The HEART-ACHD* study was designed to help the medical community learn more about how to prevent congenital heart patients from becoming lost to cardiac care and how to best educate patients about their condition.

Click here to see the abstract presented at the 2012 American College of Cardiology Scientific Sessions.

Click here to see the abstract presented at the 2011 American Heart Association Scientific Sessions.

Update: Patient enrollment has ended. 

About the Study:

New patients were recruited at 11 Adult Congenital Heart centers across the United States. This project was funded through the National Institutes of Health’ Partners in Research Program, and is a partnership between ACHA and the Alliance for Adult Research in Congenital Cardiology (AARCC). AARCC, an initiative of the American College of Cardiology, works to promote multi-center collaborative research to improve outcomes for adults with congenital heart disease.

The two-year project surveyed ACHD patients at their first visit to an ACHD center. The questionnaire identified gaps in congenital heart care and barriers patients face to receiving that care. Already we are seeing that a significant proportion of study subjects are reporting having experienced a lapse in cardiac care, defined as 3 years or longer.

The study tested the effectiveness of ACHA educational materials like the Personal Health Passport through a follow-up questionnaire. After completion of the study, a community meeting will be held at each center with a local ACHA representative and a member of AARCC to share and discuss the study results.

Significance of the Study:

The development of appropriate clinical and research care systems for the adult survivors of congenital heart disease is still in its infancy. Most patients require long-term cardiology care and fifty percent of this population is living with heart defects for which published guidelines recommend care from specialists in adult congenital heart disease (ACHD).^2,3,4 Despite these guidelines, the number of adults with congenital heart disease receiving this specialized medical care is much less than the projected estimates.^1,5

Despite patient, professional and federal initiatives to improve ACHD care, difficulties in providing care to this community persist. Studies have reported that many patients are lost to cardiac follow-up and some can have gaps in care of 10 years or more.^8-12 In the ACHD population, a lapse in medical care may result in adverse outcomes.^6-8,13 Single center studies have shown those with a lapse in care are more likely to require urgent cardiac interventions or have untreated cardiac-related medical conditions.6,7 Based on small studies of patients with heart disease and other chronic pediatric-onset diseases, potential barriers to accessing specialized care include lack of patient education about their condition and the need for regular follow-up, health insurance, negative experiences in adult-oriented care, and lack of available qualified specialty centers.^12,14-16

This study will provide new information on lapses in care and barriers to receiving cardiac care for our ACHD patients. It is hoped that, based on these results, new processes will be developed to address these issues and keep patients in appropriate care settings; thus improving long-term health and outcomes. The study also promotes continued collaboration between academic centers and ACHA which will hopefully foster further research participation by ACHA and by patients in the community.

AARCC-member ACHD centers participating in the study include centers at:

University of Washington Medical Center
Children’s Hospital Boston
Hospital of the University of Pennsylvania
University of Colorado Medical Center
Oregon Health and Medical Center
Columbia University Medical Center
Medical College of Wisconsin
Children’s National Medical Center
Penn State University Medical Center
Nationwide Children’s Hospital
University of California Los Angeles Medical Center

*The project described 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 or the National Institutes of Health.

References:

1. U.S. Department of Health and Human Services. Healthy People 2010. 2nd Edn. (Understanding and improving health, Vol. 1).Objectives for improving health, Vol. 2). Washington, DC: U.S. Government Printing Office; November 2000.
2. Warnes CA, Liberthson R, Danielson GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. Apr 2001;37(5):1170-1175.
3. Hoffman JI, Kaplan S, Liberthson RR. Prevalence of congenital heart disease. Am Heart J. Mar 2004;147(3):425-439.
4. Therrien J, Gatzoulis M, Graham T, Bink-Boelkens M, Connelly M, Niwa K, Mulder B, Pyeritz R, Perloff J, Somerville J, Webb GD. Canadian Cardiovascular Society Consensus Conference 2001 update: Recommendations for the Management of Adults with Congenital Heart Disease--Part II. Can J Cardiol. 2001 Oct;17(10):1029-50.
5. Niwa K, Perloff JK, Webb GD, et al. Survey of specialized tertiary care facilities for adults with congenital heart disease. Int J Cardiol. Aug 2004;96(2):211-216.
6. Williams RG, Pearson GD, Barst RJ, Child JS, del Nido P, Gersony WM, Kuehl KS, Landzberg MJ, Myerson M, Neish SR, Sahn DJ, Verstappen A, Warnes CA, Webb CL; National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease.Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol. 2006 Feb 21;47(4):701-7.
7. Khairy P, Aboul Hosn J, Broberg C, Cook S, Earing M, Gersony D, Kay J, Landzberg MJ, Nickolaus MJ, Opotowsky S, Valente AM, Warnes C, Webb G, Gurvitz MZ. Multicenter research in adult congenital heart disease. Int J Cardiol. 2008; (Invited review)
8. Yeung E, Kay J, Roosevelt GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol. Apr 16 2007.
9. de Bono J, Freeman LJ.Aortic coarctation repair--lost and found: the role of local long term specialised care. Int J Cardiol. 2005 Sep 30;104(2):176-83.
10. Wacker A, Kaemmerer H, Hollweck R, Hauser M, Deutsch MA, Brodherr-Heberlein S, Eicken A, Hess J. Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol. 2005 Mar 15;95(6):776-9.
11. Kidd L., Driscoll D., Gersony W.: Second natural history study of congenital heart defects: results of treatment of patients with ventricular septal defects. Circulation 87. (2 Suppl): 138-151.1993.
12. Verstappen A, Pearson D, Kovacs AH. Adult congenital heart disease: the patient’s perspective. Cardiol Clin 2006; 24: 515–529.
13. Gurvitz MZ, Inkelas M, Lee M, et al. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol. Feb 27 2007;49(8):875-882.
14. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005 Jan;115(1):112-20.
15. Moons P, De Volder E, Budts W, De Geest S, Elen J, Waeytens K, Gewillig M. 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 Jul;86(1):74-80.
16. Dearani JA, Connolly HM, Martinez R, Fontanet H, Webb GD. Caring for adults with congenital cardiac disease: successes and challenges for 2007 and beyond. Cardiol Young. 2007 Sep;17 Suppl 2:87-96.