The patient journey of adolescents and young adults with thyroid cancer: A social media listening study in China

Objective: This study aimed to explore the experiences of Chinese patients living with thyroid cancer through a social media listening approach.Methods: Posts related to the lived experience of thyroid cancer were collected from Sina Weibo using Python and cleaned manually.The eligible 4431 posts were categorized based on the treatment phase of thyroid cancer.Latent Dirichlet Allocation was applied to identify distinct topics to map the patient journey and describe their lived experiences.Results: Twenty-four topics were identified and categorized into various challenges and related factors, reflecting the evolving experiences of thyroid cancer survivors throughout their cancer journey.The main challenges included decision-making regarding treatment, managing long-term life with treatment, and returning to normal life.The impact of patients' social networks on their lived experiences was highlighted.Patients sought both medical professional medical information and experiential information, as well as emotional support, to address these challenges.By revealing the dynamic nature of patients' experience, this study identified several opportunities for improving health services.These findings emphasize the unique challenges and emotional experiences that AYA patients face at various stages of their cancer journey and highlight the need for tailored support from all members of their social networks.Conclusions: Social media data can provide insights into patients' cancer journeys and help develop tailored health services and improve care.Tailored support should be provided based on patients' specific information and emotional needs at different stages of the cancer journey, as well as considering the impact of social networks.