Truth in Advertising: Are We Providing Consumers With the Proper Information to Participate in Decision Making About Hypoplastic Left Heart Therapies?

Introduction: Consumer Health Informatics has become an integral part of healthcare in 2015. The purpose of this survey study is to examine the information available on the internet to a parent(s) of a fetus diagnosed in utero with hypoplastic left heart disease (HLHD) and compare those to scientific, peer reviewed published data. Specifically, is the the provider data complete enough for prospective parent(s) to make a rational decision as to whether to proceed with a 3 stage repair or choose another option. Hypothesis: The formally untested hypothesis is that there is a signifcant gap between what is actually known to providers and what is presented to prospective parent(s)on provider websites. Methods: Using the list of the top 10 rated Pediatric Cardiovascular programs as ranked by the U.S. News World Report (USNWR) we collected the published information with respect to: # cases of HLHD operated on for Stage 1 Norwood at the hospital/program in question, Stage 2 Glenn shunt and Stage 3 Fontan; morta...