The goal of the ParentAL Knowledge study is to learn how to better educate parents and guardians about the need for children with congenital heart defects to maintain lifelong cardiac care.

Read the abstract of the article, "Parental Knowledge Regarding Lifelong Congenital Cardiac Care," published in Pediatrics, the official journal of the American Academy of Pediatrics, on Nov. 28, 2011.

See the abstract presented at the 2010 American College of Cardiology Scientific Sessions

See ACHA’s press release on the poster presented at the 2010 American College of Cardiology Scientific Sessions

About the Study:

The goal of the Parental Knowledge study is to learn how to better educate parents and guardians about the need for children with congenital heart defects to maintain lifelong cardiac care. This project is a partnership of ACHA and the new association of Adult Congenital Care Cardiac Associates (ACCCA), an organization which brings together ACHD nurses, PAs, MSWs, and psychologists to execute congenital heart research. As President of ACCCA, Sue Fernandes, PA-C at Children’s Hospital Boston, is coordinating the project. The study is now underway at nine pediatric congenital heart centers nationally. It involves two parts: a survey and an educational campaign. The survey of parents and guardians of children with CHD will help the medical community learn more about what parents of children with congenital heart defects know about their child’s life-long heart care needs and what they believe to be the best settings for care delivery and the frequency of visits needed for their child.

Eligible parents/guardians are those whose children have undergone surgical repair for one of four heart defects: Tetralogy of Fallot, coarctation of the aorta, transposition of the great arteries and single-ventricle physiology (with Fontan) because children with these defects undergo more common surgical repairs.

After the survey is complete, an educational campaign called the Life Long Care Campaign will begin. Brochures and posters will be distributed at the research sites, as well as to 50 other pediatric heart centers, our network of parent support groups and their members, Ronald McDonald Houses and on-line CHD-related chat rooms. Upon completion of the Life Long Care Campaign, a different group of parents will be given the Parental Knowledge survey. This will measure the impact of the educational materials and outreach strategies used with parents of children with congenital heart defects.

Significance of the Study:

Congenital heart disease is the most common inborn defect. Improved surgical techniques and medical therapies for pediatric patients have led to the survival of more than one million adults with congenital heart disease in the United States, as over 20,000 graduate to adulthood yearly. It has been estimated that nearly 50% of this population requires life-long specialized care. In contrast, the number of adults with congenital heart disease receiving this specialized medical care represents a fraction of projected estimates In addition, the majority of patients actually receiving care have experienced large gaps in follow-up, typically starting in late adolescence and often extending until the onset of an acute health crisis.

Reasons for care gaps likely include educational factors, but despite numerous initiatives to sensitize patients regarding the need for life long medical care, the challenges remain substantial. Foremost among these difficulties is the inability to reach out to patients who have been lost to care. It is therefore important to improve education prior to loss to care in order to maximize the likelihood that patients who require specialized life-long care benefit from it.

ACHA recognizes that the way to improve the lives of adults with congenital heart disease is to encourage and ensure “Lifelong Cardiac Care” (cardiac care that is without interruption throughout a patient’s lifetime, provided at appropriate intervals by appropriate providers as described in published adult congenital heart care guidelines). As such, the ACHA is promoting efforts to engage patients and their families prior to loss to care through this study and campaign.

We expect that upon completion of this project the Parental Knowledge study results will help the medical community to better understand what parents and guardians of children with CHD know about their children’s future health care needs, and will help ACHA evaluate its educational approach through the Life-Long Care Campaign. This knowledge will be used to design future research projects and larger-scale direct targeted educational initiatives and programs.

Participating centers include:

Nationwide Children’s Hospital
Children’s Hospital Boston
University of Florida
UCSF Medical Center
Akron Children’s Hospital
Children's Hospital Los Angeles
The Children's Heart Clinic
Miami Children's Hospital
Penn State Hershey Medical Center

References:

Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation. 2007 Jan 16;115(2):163-72

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.

Hoffman JI, Kaplan S, Liberthson RR. Prevalence of congenital heart disease. Am Heart J. Mar 2004;147(3):425-439.

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

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.

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.