A Web-Based Intervention Preparing Adolescents to Transition to Adult Care for Sickle Cell Disease

PI’s: May Wang

As per the annual report published by the National Institute of Health, it is estimated that 1000 babies are born with Sickle cell disease every year in America*. Teenagers tend to have certain misconceptions about their SCD condition and treatment which are rarely recognized or addressed in regular clinical consultations. After reviewing the literature in this field, we have identified that improving patient knowledge can be effective in augmenting engagement, and considerably improving their clinical outcomes.  It is necessary to develop an effective educational intervention that can help SCD patients change their perception about self-efficacy and ultimately reduce the total health care costs incurred.  Hence, a sound transfer of knowledge during the transition from childcare to adult care is highly recommended. On these very lines, Georgia Institute of Technology designed an interactive educational application called SickleCellAcademy in conjunction with Children’s Healthcare of Atlanta. This website resides in the public cloud and uses a novel animation video–based curriculum to deliver essential healthcare education to adolescents with SCD in an interactive manner.

What distinguishes it from similar initiatives is the use of a cost-effective technique to simulate caregiver-patient interactions and the ability to cater to a wide range of socio-economic statuses and educational levels. A group-based study with SCD adolescents was conducted to evaluate the user acceptance and performance of SickleCellAcademy supplemented by regular check-ups over a period of eight to ten weeks. Observations recorded post the study clearly indicate higher levels of engagement and the systematic dissemination of information offered by SickleCellAcademy.




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