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What can we do for you?

Submitted by admin on Fri, 03/05/2010 - 11:57

We want to know what we can do for you. As a patient or parent, what do you expect from your surgeons apart from the routine care that you get? How can we help you more?

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saska72 Wed, 06/16/2010 - 09:14

where can I find outcomes for particular surgeons?

 

admin Fri, 06/18/2010 - 11:42

The Society of Thoracic Surgeons (http://www.sts.org) collects cardiac surgical data from a large number of hospitals in North America. But the outcomes are available only to those members’ hospitals and their surgeons. So the best access to outcomes information is from the individual surgeon’s office. The surgeon should be willing to discuss this with you, and it is your right to ask.

The Society of Thoracic Surgeons also has a “Risk Calculator” to estimate the in-hospital outcomes of adult cardiac surgery (http://209.220.160.181/STSWebRiskCalc261/de.aspx). But these calculations are not surgeon-specific and are limited to adult (acquired) heart disease, not congenital heart disease. Because of the rarity and wide variation in types of congenital heart disease that require surgery, it is not yet possible to create a similar risk calculator for congenital heart surgery.

The Congenital Heart Surgeons’ Society data centre (http://www.chssdc.org/) has created a risk calculator for one specific diagnosis (newborns less than age 28 days with critical aortic stenosis). But it is designed to estimate the difference in 5-year survival with either one of 2 surgical options.

The availability of information about congenital heart surgery outcomes vary among jurisdictions (i.e. cities, state, provincial, etc). Data may be available on Internet sites for some areas, but we are not aware of how to locate these potential sources.

Thank you for writing to us about this important question. We hope our answer is of some help to you and your family.

Kristenspyker Wed, 08/07/2013 - 17:58

 Hello, I am a Mother of a Son who has a very rare congenital heart defect and it was very difficult to get information from some surgeons about their outcomes.  Some were very wiling to give the numbers and others were not.  I am having a hard time understanding why this is even a choice.

 I think that these outcomes need to be mandated by either the state department, CDC, or HHS. How can we come together as physicians and parents and make this happen? I also have very clear and easy ideas on how to put the information together in a way that is user friendly, and I have a very firm grasp of how the CHD community would like this data provided to them.   Is there someone I could talk to about working together on this?

Thanks

Kristen