DEVELOPING AN ELECTRONIC PATIENT DECISION AID FOR FEMINIZING GENITOPLASTY FOR CONGENITAL ADRENAL HYPERPLASIA
Irtaza Tahir, B.Sc, M.Sc, Melissa McGrath, BASc, Smruthi Ramesh, BSc, Luis H. Braga, M.D., M.Sc, PhD.
McMaster University, Hamilton, ON, Canada.
BACKGROUND: Treatment decisions for caregivers of children with congenital adrenal hyperplasia (CAH) can be overwhelming and emotional with a flood of new terms and facts about their child's condition. This cognitive confusion has been linked to post-traumatic stress in those caregivers. One tool that can help educate and support caregivers in decision making in such a situation is a patient decision aid (PtDA). Therefore, the objective of this study was to perform a requirements analysis to learn about what families and practitioners need from an electronic PtDA about the timing of feminizing surgical treatment of CAH.
METHODS: Participants were sampled using convenience sampling. A novel qualitative methodology, the persona-scenario, was used to engage potential end-users of the PtDA. Participants were guided to make fictitious, authentic characters and stories about how someone might use the tool. These stories were coded and analyzed for user requirements using NVIVO 11 Pro.
RESULTS: Four healthcare practitioners, eight parents of children with CAH (50% female), and two adult patients who had feminizing genitoplasty in infancy participated in the persona-scenario sessions. Participants created 9 diverse persona-scenarios indicating a range of literacy levels, comfort with technology and roles (practitioners, parents, and patients). Analysis of session notes and transcripts revealed 446 unique user requirements, the majority of which were assessed as feasible, desirable, and viable. User requirements were categorized into (1) information and decisional content, (2) proposed functionalities, (3) web-usability related requirements, and (4) implementation context (Figure 1). While many of the user requirements were novel, others reinforced what has been previously described in the literature regarding the information and support needs of CAH families.
CONCLUSIONS: User requirements that met human centered design will be interpreted into user specifications that will inform the design and development of a prototype patient decision aid. Further research is needed to understand how to best implement user requirements within the PtDA in an evidence-based manner. 
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