Patient Information Project

b.The Project
d.Additional Funding

Information from The Family Guide to Congenital Heart Disease
(Information is from the pilot project for The Family Guide to Congenital Heart disease and is text only. The CD-ROM version contains color photographs and illustrations, animation, interviews with patient and doctor, and more.)

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Congenital Heart Defects are more common than most people realize. One out of every 100 babies is born with a congenital heart defect. That is 300 a year in Oregon. Congenital heart defects are the largest cause of pre-birth and newborn mortality. Heart defects are the most common birth defect.

Since the 1950s doctors have had the ability to surgically repair congenital heart defects. Surgical techniques continue to improve and survival rates continue to increase. But even so, a baby born with a congenital heart defect faces both an immediate medical crisis and serious long term health issues. Congenital heart defects are diagnosed most often during pregnancy or just after birth.

Parents who have experienced the heartbreaking and traumatic event of being told that their baby has a heart defect report initial denial and confusion. Often they are not able to absorb information provided by doctors. Nurses may not be trained in congenital heart defects or may not have updated information. The same may be true of HMO case workers. For a parent this is a confusing and frightening time. When they get home the questions start coming. Parents want to know what went wrong. Were they responsible? Did the mother do something wrong during pregnancy? What exactly is wrong with their baby's heart? What will it take to fix it? What are the long-term consequences? Will their child be able to lead a normal life? What and where is the best treatment? If they are faced with a decision on type of treatment, they may want to know past outcomes of treatments offered. What will happen to their baby during treatment? How long will their baby have to stay in the hospital?

"We were making life and death decisions and all we had was a general pamphlet, which didn't even address our baby's heart defect. We tried to do our own research, talking to the doctor and going to the library, but there was very little information available and what there was, was highly technical and not targeted to parents. It would have been wonderful to have had a resource like this available to us." --Mylene Walden, parent

Many of OHSU's patients report problems in obtaining relevant and in-depth information to help them make the difficult decisions they face. Information on congenital heart defects is not readily available to the general public. This is particularly true of patients living in rural areas and 80 percent of OHSU's patients come from outside the Portland metro area.

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In an effort to respond to patient needs, the Heart Research Center is creating the Family Guide to Congenital Heart Disease. It will be available in either CD-ROM or video format, and will contain detailed information on the heart, heart development and a number of different congenital heart defects. It will also contain information on resources available to families affected by congenital heart disease. The goal is to provide parents the information they need to understand their child's condition, make informed decisions, know where to go for the best treatment and be reassured that they are doing the best thing for their baby.

This guide will particularly benefit rural and indigent patients (the majority of patients at OHSU) who do not have access to the information and resources that patients in the metro area might have. The guide will be provided through hospitals, managed care providers, doctors, clinics or libraries. It also will be used by nurses or HMO case workers for their own information, or to view with patients. And it can be used by parents to explain to their children the child's condition when the child is old enough to want to know.

The project is being led by Kent Thornburg, Ph.D. , director of the Heart Research Center and an expert on embryonic heart development; and Jeff Pentecost, D.O. , a physician with special training in medical informatics. Between them, and with the resources of the Heart Research Center, they bring a unique collaboration of skills and experience critical to the success of the project. The guide has been reviewed by parents who are associated with the Heart Research Center and who have experienced the trauma of having a baby with a congenital heart defect. Their comments and suggestions have been incorporated into the module. All have expressed the wish that it had been available for them!

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Using funds provided by the Heart Research Center and the March of Dimes, Jeff Pentecost and Joseph D'Angelo have been working on a prototype of the Family Guide. The prototype consists of the chapter covering ventricular septal defects, the most common congenital heart defect. Click here to see the prototype. When completed, the guide will cover more than eight additional defects.

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Initial funding for the prototype development came from the March of Dimes and the Heart Research Center. Funding to complete the project after the prototype stage is being sought from a number of areas. Among those to be approached are people interested in rural health issues as well as former patients. The Family Guide will be a marketable product when it is finished. The Heart Research Center is working with the Office of Technology Management at OHSU to ensure that they are copyrighted and marketed appropriately.

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It is hard to overstate the value of this project. It is of historic and national significance. Its greatest value is that it will provide parents experiencing the trauma and pain of dealing with a child born with a congenital heart defect, the information they need to make informed and rational decisions about the care of their child.