Abstract: PUB275
Innovative Approaches for Increasing Community Engagement in ADPKD
Session Information
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Cystic
Author
- Deshpande, Priya, Mount Sinai Health System, New York, New York, United States
Background
The purpose of this project is to increase community engagement and awareness by creating podcasts that address important topics for patients with ADPKD using a culturally sensitive approach in both English and Spanish. This study is sponsored by the PKD Cure Foundation.
Methods
Podcasts in both English and Spanish were created with a patient stakeholder (a native Spanish speaker), two nutritionists, one of whom is a native Spanish speaker and a physician (fluent in both English and Spanish). To date 6 episodes (3 in English and 3 in Spanish) of the podcast series were created. Topics include: Nutrition in ADPKD, “I was diagnosed with ADPKD, what do I do next?,” and Transplantation in ADPKD (to be published). The podcasts were recorded on Zoom, edited, and then published on Spotify platform. Analytics were collected using Spotify analytics. The podcasts were promoted on Facebook (Meta), X and Instagram. An optional “yes” or “no” one question survey in both English and Spanish was administered (“Did this podcast increase your knowledge about this topic?”). The podcast series was also promoted by word of mouth to our patients in our PKD Clinic.
Results
A total of 14 individuals, primarily male with a median age of 43, followed this podcast series. Followers were primarily from the US (76%) and 10% of the followers were from Spanish speaking regions/countries. The most listened to podcasts in both English (52%) and Spanish (23%) were about nutrition and lifestyle. Three audience members who listened to the English version of the nutrition episode and three voters who listened to the Spanish version of the nutrition episode felt that the episode improved their overall understanding of nutrition in ADPKD.
Conclusion
This study supports the feasbility of using to help disseminate information and promote patient engagement about ADPKD. The results show that the podcasts are reaching the Spanish speaking population. The most popular episode was about nutrition and lifestyle in ADPKD. These results support the further development of patient facing podcasts in both ADPKD and other conditions.
Funding
- Private Foundation Support