A retrospective study to understand the journey and health status of patients with unexplained or refractory chronic cough in the Netherlands.

IntroductionThis study aims to characterize the patient journey for refractory chronic cough (RCC) or unexplained chronic cough (UCC) before visiting the Isala Chronic Cough Clinic (ICCC) in the Netherlands.MethodData from 152 patients with RCC or UCC was collected between January 2017 and September 2021from General Practitioner (GP) and hospital charts, the EQ-5D-5L questionnaire, and a patient survey about the care pathway and cough impact on everyday life, based on a single-centre, observational, retrospective study design.ResultsMean age at first ICCC visit was 60.3 ± 11.6 years; 66.4% of patients was female. More patients had RCC (80.9%) than UCC (19.1%). Mean cough duration before ICCC visit was 8.5 ± 6.5 years. 41.4% of patients reported cough >10 years. Common patient-reported problems were social embarrassment (58.0%), exhaustion (54.2%), and sleep disturbance (45.0%). Urinary incontinence was prevalent among women (48.9%). Prior to ICCC, 59.2% had consulted 2-4 specialists for their cough and 16.2% had seen more than 4.ConclusionThis study highlights the long time to diagnosis of RCC or UCC, and the negative effect on patients' physical and psychological health, and everyday activities. Increased awareness may shorten time for diagnosis, and novel therapies may help reduce this disease burden.