Understanding the adult and adolescent patient experience with cyclic vomiting syndrome: a concept elicitation study

Cyclic vomiting syndrome (CVS) is a phasic disorder of gut-brain interaction characterized by episodes of severe nausea and vomiting. In-depth qualitative research on phase-specific CVS symptoms and impacts is lacking. The study objectives were to explore the experience of patients with CVS in the United States and to identify CVS symptoms and impacts on adults, adolescents, and caregivers.

Qualitative, cross-sectional, semi-structured concept elicitation interviews were conducted with adults and adolescents with CVS and with adolescents' caregivers. Adolescents either participated alone or in a dyad format with their caregiver. Interview data were analyzed using an open coding approach.

Concept elicitation interviews were conducted with 13 adults (mean age 45.3 years [standard deviation (SD) 13.1]) and 15 adolescents (mean age 14.6 years [SD 1.8]). The most frequently reported prodrome phase symptoms were nausea (n = 12, 92.3%), anxiety (n = 10, 76.9%), and abdominal pain (n = 9, 69.2%) in adults, and nausea (n = 15, 100%), abdominal pain (n = 11, 73.3%), and headache (n = 11, 73.3%) in adolescents. All adults reported nausea, tiredness, and dry heaves in the emetic phase, and 12 (92.3%) reported vomiting and retching. The remaining patient said they no longer vomited due to abortive medications. All adolescents reported nausea and vomiting in the emetic phase; other common emetic phase symptoms were abdominal pain (n = 14, 93.3%), dehydration (n = 13, 86.7%), and tiredness (n = 13, 86.7%). The leading most bothersome impact reported by adults was anxiety associated with impending vomiting (n = 5, 38.5%). Among adolescents, the leading most bothersome impact was on school (n = 7/13 asked, 53.8%), and among their caregivers, it was seeing their child suffer (n = 6/11 asked, 54.5%).

Patients with CVS experience considerable gastrointestinal and extra-intestinal symptoms. CVS impacts the activities of daily life of patients and their caregivers, with patients reporting negative effects of CVS on their emotional status and their ability to maintain a normal school or work routine.