Perspectives, experiences, and concerns with cyclical vomiting syndrome: Insights from online targeted‐disease forums

Abstract

AbstractIntroductionThere is limited research examining the biopsychosocial impact of cyclic vomiting syndrome (CVS) on patients. This study aims to assess individuals' experiences, fears, and concerns associated with CVS and the impact of CVS on their daily lives.MethodsWe employed social netnography to analyze publicly available posts related to CVS that were identified from six US online forums and Twitter. A randomly selected sub‐cohort of posts per pre‐defined criteria was first qualitatively analyzed using an inductive thematic approach. Then, machine learning topic modeling was applied to explore themes in an unsupervised manner for the entire corpus of posts. Afterward, findings from the qualitative and quantitative approaches were integrated to generate a thematic network.ResultsBased on the 39,179 collected posts, seven domain themes were identified. Overall, 41.4% of the posts were related to “biopsychosocial burden” of CVS, including physical impact, psychological impact, and social impact. In 22.3% of posts, individuals shared their experience of “interactions with the healthcare system”, and 14.2% of posts were related to “perceived CVS triggers.” Individuals also shared “solutions to alleviate their symptoms” and “mental health needs” in 10.2% and 8.8% of posts, respectively. Finally, 6.1% of the posts were about “seeking/sharing support” with others.DiscussionThis is the first social netnography study to describe the in‐depth experiences of individuals living with CVS and the marked impact on their physical, mental, and social health. The study also highlights the unmet need for effective therapies, both pharmacological and non‐pharmacological, to alleviate the biopsychosocial impact of CVS.