A Design-Thinking Approach to Developing an Educational Sickle Cell Trait Website

Theoretical Background and research questions/hypothesis:  Sickle cell trait (SCT) affects at least 3 million people in the US.¹ However, few individuals are aware of their SCT status.²   Parents receive SCT status information as part of newborn screening but they often fail to understand or share information about SCT with their child during adolescence.³Web-based messages tailored to teens and young adults have been found to be effective at increasing health knowledge, yet this method has not been tested for increasing knowledge of SCT or SCT status. This study describes the development of an educational SCT website.  The goal of the project was to examine knowledge needs and design preferences of target audiences (teens, student athletes, healthcare providers) for a SCT website. 

Methods:  Providers at Cincinnati Comprehensive Sickle Cell Center and the Live Well Collaborative, an academic-industry design center at University of Cincinnati, specializing in translating consumer research into products and services, conducted the study. A qualitative research design process was utilized.  First, the team conducted a comprehensive literature review and website benchmarking for SCT. Second, the team conducted nine in-depth interviews with providers and teens regarding SCT.  Third, the team conducted surveys with teens and young adults at community health events to assess style and design preferences for websites. Fourth, a concept ideation process was initiated and possible website formats were prototyped.  Finally, concepts and content were refined and validated through co-creation sessions with teens, student athletes and healthcare providers. 

Results:  A survey of 59 college students (41 females; 18 males) ages 18-22, found that 86.4% had never heard of SCT; and 88% did not know their SCT status.  Students provided feedback about website design and functionality (e.g. videos, animation). During the first month, there were over 150 unique users with 459 unique page views.  Users from the US, Brazil and Africa spent an average of 2 minutes and 30 sec. per page and on average viewed 3 pages. The website address is: www.sicklecelltrait.org.

Conclusions:  Data suggest knowledge gaps about SCT among teens/young adults. We designed a user-centered website we anticipate will assist with this education. Website analytics will continue to be tracked. Next step is developing a plan to inform healthcare providers, coaches, schools and community based-organizations about the website. 

Implications for research and/or practice: Behaviors of individuals accessing the website needs assessed to see if they are discussing SCT with  family members and/or healthcare providers. References:

1. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. What You Should Know About Sickle Cell Trait, CDC website. http://www.cdc.gov/ncbddd/sicklecell/documents/sicklecelltraitfactsheet_ english.pdf  Accessed May 5, 2014.
2. Treadwell MJ, McClough L, Vichinsky E. Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait. J. Natl Med Assoc. 2006;98(5)704-710.
3. Taylor C, Kavanagh P, Zuckerman B. Sickle Cell Trait – Neglected Opportunities in the Era of Genomic Medicine. JAMA 2014; 311(15) 1495-1496.
4. Pew Research Internet Project – Internet User Demographics, www.perinternet.org/data-trend/teens/internet-user-demographics/ Accessed May 13, 2014.