Abstract / Summary
Background: Palliative care is suboptimal in pulmonary fibrosis. Symptom burden is high despite evidence-based interventions, guidelines, and information resources. The application of existing knowledge and methods to optimally manage palliative and end of life care for people with pulmonary fibrosis in the UK has not been realised. Aim: To establish patient views and understanding of how palliative care services and approaches can better meet the needs of people with pulmonary fibrosis. To identify the current barriers and facilitators to receiving palliative care services. Design: Qualitative exploration of patient views via semi-structured interviews and focus groups. Content analysis was conducted. Setting/Participants: The study was conducted from March to August 2024 within an Interstitial Lung Disease Specialist Centre, based in an NHS acute Trust. Results: Two focus groups and four interviews were conducted, involving nine patients. Four overarching themes were identified as to how palliative care can better meet the needs of this group: (1) establishing mechanisms for identifying and addressing palliative care needs; (2) open channels of communication with healthcare professionals; (3) the importance of a palliative care approach within respiratory, community and specialist services; and (4) support for unpaid/family carers. Conclusions: Patients highlighted the importance of person-centred principles and services that adapted to their needs (such as real-time telephone support), rather than services that imposed their own requirements on the patients. Understanding how existing palliative care provision can meet this standard could help improve the palliative and end of life care for people with pulmonary fibrosis.