Abstract 9747: Truth in Advertising: Are We Providing Consumers With the Proper Information to Participate in Decision Making About Hypoplastic Left Heart Therapies?

Abstract

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; mortality at each stage ; interstage mortality ; mortality data for patients completing all 3 stages ; neurodevelopemntal outcomes and other morbidities. For comparison, we used published data on outcomes of HLHD surgery and follow-up from the Society for Thoracic Surgery as it encompasses the largest collection of datasets from many U.S. programs. We compared the STS data set to the publsihed information from the websites.. Results: Websites did not present the statistical data presented by the STS. In addition, no website listed the exact incidence of their interstage mortality, neurodevelopemntal outcomes nor morbidities at their site. Conclusions: 1. Information published on websites of the top 10 USNWR programs provide information that tell only part of the story of outcomes for HLHD. 2. Critical pieces of information such as interstage mortality and significant morbidities, are not reported. 3.We must reasses the amount and type of data presented on hospital/program websites