130: Inequity Amongst Children's Developmental Conditions: Marketing Tactics in a Crowded Field. Issue 6 (1st June 2014) - D'Agostini, S
Abstract: BACKGROUND: Evidence suggests that parents use the Internet to find information and resources for their children's health condition, yet web presence differs and some health conditions sell their information and resources more effectively than others. OBJECTIVES: The purpose of this study was to compare the web content available in the google domain for five pediatric developmental disorders and to determine the characteristics and implications of these differences for health information and health service access. DESIGN/METHODS: Research was conducted on five pediatric developmental disorders: CF, FXS, Down Syndrome (DS), Duchenne Muscular Dystrophy (DMD), and Spina Bifida (SB). These disorders were chosen because they each are: lifelong, incurable, multi-systemic and genetically-based. Content analysis was conducted using a coding sheet that allowed for consistent evaluation of the Google domain content retrieved via standardized search queries. Content analysis was conducted on pre-set dates and times, with the top 30 links being ranked and evaluated. RESULTS: Significant differences were seen between the disorders with respect to total number of hits, website category and website content. Averaged over two research sessions, DS and CF accumulated more hits overall (101, 300, 000 and 23, 500, 000 respectively) with the other disorders totaling to less than 5, 100, 000 hits each. For website category, CF and SB were found to have a higher proportion of National Organizations ranking in the top 30 hits; DS had the greatest proportion of local organizations, while DMD and FXS had the majority of their top 30 hits dedicated to health informational databases. A subjective analysis of tone was performed on the top 30 hits; >65% of the websites for both CF and DS depicted an overarching positive tone, while at least 50% of each of SB, DMD and FXS's hits were neutral. Of note, websites targeted the public as their audience as opposed to those affected by the condition. CONCLUSIONS: Although these disorders share many attributes, they present vast differences in both their web presence and web content. CF and DS present a more well-rounded and positive approach to the disease, while FXS, SB and DMD focus more on dissemination of disorder- related information. These disparities in resources and access to information among disorders hold many implications for practicing physicans as well as the health care system at large. Physicians should be mindful that more activist disorders may receive inequitable attention from the health care system. Improvements to tools and information are necessary to provide reliable and useful online resources to families for FXS, SB and DMD.