Abstract: PUB193
IDEA: Development of the First Decisional Support Tool for Black American Potential Living Kidney Donors Contemplating APOL1 Genetic Testing
Session Information
Category: Genetic Diseases of the Kidneys
- 1202 Genetic Diseases of the Kidneys: Complex Kidney Traits
Authors
- Gardiner, Heather Marie, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Barker, Jessica Sydni, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Werner, Dena, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Hollin, Ilene, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Bass, Sarah Bauerle, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Siminoff, Laura A., Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Blunt, Ryan M., Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Slashinski, Melody J, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Wang, Xiangling, Cleveland Clinic, Cleveland, Ohio, United States
- Gillespie, Avrum, Temple University Hospital, Philadelphia, Pennsylvania, United States
- Weis-Haggerty, Marina, NuRelm, Pittsburgh, Pennsylvania, United States
- El Nokali, Nermeen, NuRelm, Pittsburgh, Pennsylvania, United States
- Shaaban, Sam, NuRelm, Pittsburgh, Pennsylvania, United States
- Lind, Ryan T, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Rentler, Jonathan, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
- Kachur, Elizabeth K, Temple University College of Public Health, Philadelphia, Pennsylvania, United States
Background
APOL1-associated kidney disease disproportionately affects people of African ancestry, necessitating appropriate genetic testing (GT) for Black American (BA) potential living kidney donors. This study describes the development of Informed Decisions About APOL1 (IDEA), a culturally tailored decisional support tool for APOL1 GT in living kidney donation.
Methods
IDEA was developed in three phases. Phase I involved designing a wireframe based on results from focus groups, surveys, and expert input covering key topics. Phase II included prototype development with NuRelm, an app development company. In Phase III, trained standardized healthcare providers guided BA participants through four rounds of simulated consultations using the app; participants completed pre- and post-simulation surveys and focus groups after each round to solicit feedback on the app, from which iterative refinements were subsequently made.
Results
30 BA participants engaged in four rounds of simulations. 60% were male (n=18), with an average age of 56.2 years (SD= 11.6). Post-encounter survey results indicated that 93.3% (n=28) of participants rated the app as either good, very good, or excellent, while 90% (n=27) found the app easy to use. All respondents reported that the app would be useful for individuals contemplating APOL1 GT. 93.3% of participants felt that they had enough information to make a decision about GT after completing the simulated consultation, and 90% reported that they would have opted to undergo GT. Main participant suggestions for improving the app included enhancing the aesthetics with brighter colors, streamlining the risks and benefits section, and adding more information and resources on inherited risk and live kidney donation. Refinements were made to the app following each round of simulations based on participant feedback.
Conclusion
IDEA is a novel tool to support informed decision-making for BA potential living kidney donors. The final phase will gather transplant professional feedback via a Delphi process.
Funding
- NIDDK Support