Background Idiopathic Pulmonary Fibrosis (IPF) is a progressive condition of the lung with no known cause or cure. Whilst treatments slow disease progression, symptom control remains paramount to improving quality of life. Cough is a predominant symptom, however, the underlying mechanism is unknown and medications seldom provide relief (Hope-Gill et al. 2003). This study aims to characterise the way patients and their family perceive cough and the impact on their daily lives.
Methods Eligible patients had a diagnosis of IPF and a chronic cough. A convenience sample was drawn from an ongoing cross-sectional study and consented to face-to-face interviews in the outpatient setting or at home. Thematic analysis was used to analyse the transcripts.
Results 12 patients (9 male), aged 45–84, with a history of IPF spanning 1–57 months and 11 family members (females) participated. Patients and family see cough as marker of disease. Cough initially motivated patients to seek health advice which led to the diagnosis and from this, cough is perceived as a reminder of the condition and used as a measure of disease progression. There are degrees of understanding, acceptance and ability to cope with cough, depending on family members, friends and societal awareness of patients’ condition. Cough also generates resentment, anger and denial, some of which stems from lack of communication.
Conclusions Patients and family use cough to monitor disease progression. However, the lack of a clear link between the two makes it challenging for clinicians to support patients to manage IPF. Communication and information sharing between patients, family and clinicians enhance coping mechanisms.