Hello, my name is Paige Conrad. I'm a third year medical student at Nova Southeastern University College of Osteopathic Medicine, and I will be presenting a poster on a qualitative evaluation of Huntington's disease perspectives on social media. Huntington's disease is a neurodegenerative disorder that presents with neuropsychiatric symptoms, movement symptoms, as well as a gradual cognitive decline. Later stages of Huntington's disease have been linked to an increased emotional burden on patients and their caretakers, and social media has the potential to serve as a source of support and education for patients and caregivers, as well as raise awareness of the disease. The objective of this study was to qualitatively examine the content of the most watched videos related to Huntington's disease on the social media application TikTok, and explore how social media is currently being utilized to discuss the disease. In order to do this, we conducted a cross-sectional qualitative analysis of the top 100 most-liked videos with the search Huntington's disease. The video content that primarily discussed Huntington's disease was included, and anything unrelated was excluded. Principles of grounded theory were used to identify common emergent themes from the video content, and three independent reviewers watched the videos and derived emergent themes. Of the 100 videos watched, 74 contained relevant data, and four themes were identified. The most frequent theme that we saw was caregiver and family perspectives. These videos involved content of family members and caregivers documenting their experiences and struggles caring for an individual with Huntington's. The second most frequent theme that we saw was education. These videos involved conversations about public perspectives of Huntington's disease, educational content about the disease, as well as various research fundraising campaigns for Huntington's. The next theme that we saw was patient experience. These videos involved individuals with the disease recalling firsthand experiences of their symptoms and other unique aspects of living with the disease. The last theme that was identified was genetic inheritance. These videos involved individuals documenting the process of undergoing genetic testing for the Huntington's gene mutation, as well as following up and explaining the results of their tests. So the most frequent theme that we observed, caregiver and family perspectives, suggests that families and caregivers are using social media platforms like TikTok to share their individual experiences and struggles that are unique to caring for patients with Huntington's. The second most common theme that we saw, education, suggests that individuals are using social media, such as TikTok, as a tool to provide information and raise awareness on the medical aspects of Huntington's, as well as provide information on ongoing research and fundraising campaigns for the disease. The theme of patient experience implies that individuals with Huntington's are using social media as an outlet to share anecdotes and their experiences that are unique to the condition. And the theme of genetic inheritance highlights that individuals are interested in sharing the hereditary aspect of Huntington's and raising awareness of the probability of passing on the mutated gene to family members. With the rise in popularity of social media like TikTok, it's really important to examine how we can use these platforms as a tool and a way to benefit patients living with chronic diseases like Huntington's, as well as a way to support their caregivers. Future research projects may be aimed at examining how the data collected in this study may be utilized to create and tailor support groups to meet the needs of individuals with Huntington's disease, as well as their family members and caregivers. Additional research is also needed to investigate how social media can be exploited as an educational tool for the public for chronic illnesses such as Huntington's disease. If there are any questions, please feel free to email myself or any of the other authors on this poster. Thank you very much.

Huntington's disease

TikTok

caregiver perspectives

genetic inheritance

patient experience