Autonomy, Justice, and Decision Aids: Development of Graphic Educational Tools for Treatment Options in Sickle Cell Disease

Belinda Mandrell – St. Jude Children's Research Hospital; Yvonne Carroll – St. Jude Children's Research Hospital; Lakiea Bailey – Sickle Cell Consortium; Dominique Goodson – Sickle Cell Consortium; Yoram Unguru – Johns Hopkins University; Benjamin Wilfond – Seattle Children's Hospital; Amanda Young – University of Memphis; Rushil Acharya – St. Jude Children's Research Hospital; Akshay Sharma – St. Jude Children's Research Hospital; Liza Johnson – St. Jude Children's Research Hospital

Abstract: When an infant or young child is diagnosed with sickle cell disease (SCD), parents and caregivers can become overwhelmed with treatment options. This becomes especially difficult when considering gene therapy, a potentially curative yet risky option. Given the novelty and risks associated with gene therapy, patients and physicians may struggle to make a values-based decision regarding whether to pursue the treatment. As such, the ethical design and implementation of decision aids around treatment options for SCD are needed to help patients and families make an informed decision. Patient decision aids are support tools to help individuals make complex medical decisions. They can come in different forms, such as infographics, cartoons, or websites. This project focuses on the development of the first documented narrative-based decision aid for SCD patients and caregivers. Informed by a working group of experts and qualitative research methods such as focus groups and semi-structured interviews, an educational comic-themed website was developed to explain SCD treatment options. By following a fictional patient’s story, website users can gain an understanding of gene therapy, bone marrow transplant, chronic transfusion therapy, and medication options for SCD. In addition to the website, one science fiction short story and one fairytale short story were developed to aid patients ages 7-13, along with their guardians, to learn about gene therapy. This presentation will evaluate how educational graphic stories can help facilitate patient understanding around novel treatment options.

Keywords: Sickle Cell Disease, Education, Graphic Medicine