Challenges and Burdens in Refractory Chronic Cough: Patients’ and Physicians’ Perspectives

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. Refractory chronic cough (RCC) is a disease identified in a subset of people with a cough lasting > 8 weeks that persists even after treatment for known causes of cough. People with RCC may cough hundreds of times a day, with some coughs being very intense. To understand the experiences of living with RCC, adults diagnosed with the condition in the USA, the UK, and Germany were asked specific questions about their experiences. Their comments were summarised and three cough-specialist physicians commented on these perspectives. Patient feedback highlighted many unmet needs related to difficulty in getting a diagnosis of RCC and current available treatments that are not always effective. Daily difficulties faced by patients with RCC highlight the need for peer support groups. Access to a diagnostic checklist may help healthcare professionals (HCPs) reduce uncertainty and diagnose RCC sooner, requiring fewer investigations. Using wearable devices to better track coughing—such as how often it happens, when it occurs, and how long it lasts—may help HCPs monitor cough symptoms in people with RCC. However, this information should be used together with patients’ own descriptions of how the cough affects their daily lives. Finally, sharing real-life patient experiences and treatment outcomes may improve HCP awareness of RCC and support the development of new treatments. The first part of this article was written by patients, who shared their perspectives of living with RCC, followed by the physicians discussing RCC management in the context of these perspectives.