Experiences of Patients Living with Retrograde Cricopharyngeal Dysfunction

Abstract

ObjectivesRetrograde cricopharyngeal dysfunction (RCPD) is a newly described condition resulting from failure of cricopharyngeal sphincter relaxation during periods of esophageal distension that results in the inability to burp. Patients' perspectives on symptom experiences, barriers to care, and treatment benefits were investigated.Study DesignQualitative semi‐structured interviews were conducted with patients diagnosed with RCPD who had been treated with botulinum toxin injection into the cricopharyngeus muscle. Interview questions centered on their experience living with RCPD. Conventional content analysis was performed on interview transcripts.ResultsThematic saturation was reached with 13 participants. All participants were diagnosed with RCPD by an otolaryngologist and underwent botulinum toxin injection into the cricopharyngeus muscle with or without dilation of the upper esophageal sphincter in the operating room. Participants described having no memories of ever being able to burp, and all started experiencing RCPD symptoms during adolescence. Patients with RCPD experienced increased social isolation, lost productivity, and worsened mental health. Unanimously, participants first learned about RCPD on social media. All patients were seen by physicians in non‐otolaryngology specialties regarding their symptoms prior to learning about their RCPD diagnosis and undergoing treatment by an otolaryngologist. Dilation and chemodenervation resulted in complete resolution of RCPD symptoms for 84.6% of participants. Participants emphasized a desire for more health providers to learn about RCPD and the impact it has on quality‐of‐life.Conclusion(s)The lived experience of patients with RCPD significantly impacts quality of life and is often met with diagnostic barriers in the medical community. Although social media plays a significant role in increasing awareness of RCPD, physician education about the impact of RCPD is essential to improve diagnosis and treatment.Level of Evidence4 Laryngoscope, 2023

Retrograde Cricopharyngeal Dysfunction: A Review

“…People living with RCPD often report never being able to burp with bothersome symptoms starting in adolescence that continue to worsen into adulthood [5]. Qualitative interviews conducted with patients living with RCPD revealed that patients with RCPD are most affected by symptoms of bloating and gurgling noises, which cause increased anxiety, social isolation, and decreased productivity (days absent from work and/or school) [24]. In search of reprieve, patients make lifestyle modifications, change their exercise regimen, limit or modify their diet, and try remedies posted on online forums such as 'air vomiting' (self-inducing vomiting to release trapped air in the stomach) in efforts to minimize their symptoms [24].…”

“…Members sharing their symptoms and experiences living with RCPD provide detailed accounts of how to 'air vomit' (self-induced vomiting with the goal of allowing trapped air in the stomach out), their diagnosis of RCPD, and their experiences with botulinum toxin treatment. Participants report bringing information they found online to their physicians to facilitate a medical diagnosis of RCPD [24]. Referrals to specific physicians treating RCPD can also be found via social media, with many otolaryngologists being named on social media sites as providing botulinum toxin injections to treat RCPD [8,24,42].…”

“…Participants report bringing information they found online to their physicians to facilitate a medical diagnosis of RCPD [24]. Referrals to specific physicians treating RCPD can also be found via social media, with many otolaryngologists being named on social media sites as providing botulinum toxin injections to treat RCPD [8,24,42].…”