Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients’ perspectives of the disease and treatment

BACKGROUND: ‘Living with IPF and an exploration of Esbriet® – a new treatment’ was an exploratory, qualitative, real-world survey of European patients with idiopathic pulmonary fibrosis (IPF) who were receiving treatment with pirfenidone prior to its commercial availability. The aim of the survey was to probe the impact of IPF on patients’ quality of life; the role of healthcare professionals and caregivers; the information needs of both patients and their caregivers; and patients’ perceptions of pirfenidone as a new treatment option for IPF. METHODS: Patients from the UK, Germany and Italy, with a diagnosis of IPF (duration >3 months), who were being treated with pirfenidone, were recruited from patient support groups, specialist centres and advocacy groups. Semi-structured, qualitative, in-depth patient interviews of 1-h duration were conducted by an independent researcher. Patients were initially asked about their experiences of living with IPF and then prompted to describe their experiences of taking pirfenidone. Techniques utilised included: the bubble-speech technique; the icon cards projective exercise; and the free association exercise. All interviews were transcribed and analysed by an independent researcher. RESULTS: Forty-five patients (71 % male) were interviewed (mean age 68.5 years; mean time since diagnosis 3.5 years); 87 % of patients reported that diagnosis took >1 year. Patients reported that IPF had a significant physical and emotional impact on their quality of life. The beneficial role played by caregivers and interstitial lung disease specialist nurses (where available) was specifically highlighted. Although most patients were keen for information on IPF, this was often of poor quality, out of date, or in English only. Patients’ perceptions of pirfenidone were largely positive and associated with ‘hope’ but were also influenced by the level of side effects experienced. CONCLUSIONS: This survey highlights the impact of IPF on patients’ lives, and the need to adequately support both patients and their caregivers. These findings demonstrate the value of seeking patients’ perspectives of a chronic disease such as IPF and how this information can be used to guide improvements in care, to best support the needs of patients with this devastating condition. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12890-016-0171-y) contains supplementary material, which is available to authorized users.