The patient journey of adolescents and young adults with thyroid cancer: A social media listening study in China.
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OBJECTIVE: This study aimed to explore the experiences of Chinese adolescent and young adult (AYA) 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. A total of 4431 eligible posts were categorized according to phases of the thyroid cancer journey. 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 AYA patients with thyroid cancer throughout their cancer journey. The main challenges included decision-making regarding treatment, managing long-term treatment-related life adjustments, and returning to normal life. The impact of patients' social networks on their lived experiences was highlighted. Patients sought both professional medical information and experiential information, as well as emotional support, to address these challenges. By revealing the dynamic nature of patients' experiences, 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 journey and support the development of tailored health services and care improvement. 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.