Abstract
Background
The objective was to explore the patients' experience of receiving a diagnosis of IPF.
Methods
Market research was conducted with an independent agency. Patients with IPF were asked to record a personal account of their experience on a hand-held camera. Face to face interviews with patients were conducted in their home. Carers were also interviewed to add an alternative perspective.
Results
The sample included 13 male and 3 female patients with IPF. Patients with lung function impairment of all severities were included, five patients were treated with oxygen therapy and another had received a lung transplant. There was a national spread geographically throughout England.
Patients consistently experienced a slow diagnostic process. Patients failed to recognise symptoms themselves which were usually identified first by others. When symptoms were recognised, action was often not taken for some time as symptoms were rationalised as being due to ageing. When help was sought, misdiagnosis further delayed specialist referral and appropriate management. In retrospect, patients felt physicians who did not truly understand IPF were too quick to attribute symptoms to smoking or COPD alone.
Patients felt that a potential diagnosis of COPD was given too quickly without proper evaluation of their condition. A common trigger for specialist referral was auscultating crackles.
Conclusions
Patients with IPF may experience a delay in specialist referral, being misdiagnosed with COPD, as they may be of a similar age and have comparable risk factors (smoking) with the assumption that "common diseases are common". Raising awareness of IPF as a differential diagnosis of COPD may help expedite specialist referral in these patients.
- © 2014 ERS