The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers

Objectives: To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers.

Background: IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member.

Methods: Thematic analysis of focus group content was obtained from thirteen participants.

Results: Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources.

Conclusions: Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.