MON-579 - Pathway to Precision: Development of a MODY Clinical Decision Support Tool Informed by Patient and Clinician Perspectives

The aim of this study was to qualitatively assess the experiences and perceptions of individuals with MODY and diabetes healthcare providers (HCPs) regarding shared therapeutic decision-making following molecular diagnosis of MODY to inform development of a MODY Clinical Decision Support (CDS) tool.

We completed 19 interviews in total with individuals with MODY (37% GCK-MODY, 37% HNF1A-MODY, 26% HNF4A-MODY) and 9 interviews with HCPs and analyzed data using thematic analysis. We also completed thematic analysis on the written treatment inquiries received by the Monogenic Diabetes Registry to augment provider interviews and further inform the components of the CDS tool. Low HCP and patient knowledge, perceptions of a lack of knowledge-seeking behavior on the part of HCPs and low-prioritization of precision treatment in diabetes were important barriers to MODY precision medicine. Patients and HCPs were favorable towards a MODY CDS tool and highlighted the need for patient and provider education components, as well as a component to aid patients in communicating and advocating for themselves with HCPs.

Based on this qualitative data, a MODY CDS tool has been iteratively built and alpha tested. Alpha testing for the MODY CDS tool required long execution cycles. Currently the MODY CDS tool is a full-stacked application that has undergone active user testing with all critical bugs resolved. It features a role-based (patient and provider) dynamic questionnaire with conditional follow-up logic. It has a sophisticated threshold-based evaluation system with 380+ passing backend tests and 40+ passing frontend tests. Output includes PDF report generation with embedded QR and share codes. Secure result sharing is via ephemeral 8-charater hex share codes with one-time access for providers. This tool will support the implementation of precision medicine for monogenic forms of diabetes. Next steps include beta testing usability, functionality, security and reliability of the MODY CDS tool, followed by a pilot-test in newly diagnosed monogenic diabetes.

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