Abstract
Refractory chronic cough (RCC) is a disease identified in people with chronic cough that persists for > 8 weeks despite adequate treatment for known cough-related aetiologies. People with RCC can experience cough > 400 times/day, some of which may be sudden, intense coughing bouts, representing a substantial disease burden. To explore their experiences of living with the disease, nine adults with RCC (≥ 18 years old; USA = 4, UK and Germany = 5) were invited to one of two advice-seeking meetings, based on referral from the healthcare professional (HCP) who confirmed their RCC diagnosis. Sessions were conducted using a semi-structured discussion guide and were audio-recorded and transcribed. Content analysis was performed using Max Qualitative Data Analysis software. Three cough-specialist physicians were then asked to provide commentary on the lived experiences of these patients. The patient and cough-specialist perspectives highlight unmet needs throughout the RCC patient journey, particularly regarding diagnostic complexity and dissatisfaction with current treatments. The negative impact of daily symptoms on quality of life underscores the need for peer support initiatives. Variability in the diagnostic journey suggests that standard diagnostic checklists could support HCPs and reduce diagnostic delays or uncertainty. Improved recognition of patient-reported symptoms remains central to addressing symptom underestimation in clinical practice. Wearable symptom-monitoring devices may provide complementary objective data, although their correlation with patient-reported symptoms can be variable. Finally, broader dissemination of the experiences of people with RCC and their real-world treatment outcomes is needed to enhance HCP awareness and inform future therapeutic development. The first section of this article is authored by patients with RCC, who describe their experiences of living with RCC; the following section is written by the physicians, who discuss the management of RCC in the context of these experiences.