Abstract

While there have been some studies looking at the needs of patients with idiopathic pulmonary fibrosis, to date no qualitative research has been conducted in the UK. This novel study aimed to assess the needs and experiences of people living with end stage progressive idiopathic fibrotic interstitial lung disease (PIF-ILD) and their informal caregivers. We also interviewed health professionals to examine views of current services, communication between health professionals and end of life planning. 18 qualitative semi-structured in-depth interviews were conducted with patients, their informal caregivers, and health professionals across two specialists ILD centres in London and in the community. Many participants reported that their main symptoms were shortness of breath and cough which impacted on every part of both theirs and the informal caregivers' lives. Psychologically, patients were frustrated and angry at the way in which their illness severely limited their ability to engage in activities of daily living and compromised their independence. Further, both patients and informal caregivers also reported that the disease seriously affected family relationships especially spousal relationships where strain was pronounced. Patients and their informal caregivers reported a good understanding of the progressive nature of their illness but held unrealistic expectations about prognosis. Health professionals expressed that there was a poor understanding of the palliative care needs of these patients, reluctance to recognise the terminal phase and poor end of life planning. All participants expressed that communication was often poor between health professionals and there was a lack of clarity about where primary responsibility for the care of the patient lay. This Phase I study has provided valuable insight into the overwhelming experiences of patients with PIF-ILD and their informal caregivers. It is clear that the disease affects the patients physically and also impacts greatly psychosocially. The palliative care needs of these patients are not being met and better co-ordination of care with improved communication is needed.