Meeting the needs of people with pulmonary fibrosis: patient perspectives on improving palliative care provision: a qualitative study

@misc{barry2026meeting,
  title = {{Meeting the needs of people with pulmonary fibrosis: patient perspectives on improving palliative care provision: a qualitative study}},
  author = {C. Barry and C. Gardener and M. Farquhar and I. Karwa and A. Wilson},
  howpublished = {medRxiv},
  year = {2026},
  month = sep,
  doi = {10.64898/2026.09.28.26364170},
  url = {https://www.medrxiv.org/content/10.64898/2026.09.28.26364170v1},
  note = {CC BY-NC},
}

TY  - UNPB
TI  - Meeting the needs of people with pulmonary fibrosis: patient perspectives on improving palliative care provision: a qualitative study
AU  - C. Barry
AU  - C. Gardener
AU  - M. Farquhar
AU  - I. Karwa
AU  - A. Wilson
PY  - 2026
DA  - 2026/09/28
PB  - medRxiv
DO  - 10.64898/2026.09.28.26364170
UR  - https://www.medrxiv.org/content/10.64898/2026.09.28.26364170v1
AB  - BackgroundPalliative 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.  AimTo 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.  DesignQualitative exploration of patient views via semi-structured interviews and focus groups. Content analysis was conducted.  Setting/ParticipantsThe study was conducted from March-August 2024 within an Interstitial Lung Disease Specialist Centre, based in an NHS acute Trust.  ResultsTwo 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.  ConclusionsPatients 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.  Key StatementO_ST_ABSWhat is already known about this topic?C_ST_ABSO_LIPulmonary fibrosis is associated with significant patient and carer need, and high symptom burden C_LIO_LIPulmonary fibrosis is associated with poor outcomes relevant to palliative care, with limited use of advance care plans (ACP), high levels of end-stage healthcare utilisation, frequent hospital deaths and poor symptom control. C_LIO_LIThere is consensus that palliative care is beneficial for this condition, but the model of care required is not clear. C_LI  What this paper adds?O_LIPatients with pulmonary fibrosis do not readily distinguish between the care they receive from the specialist respiratory services and that which they receive from palliative care services. C_LIO_LIAccessibility of services is of key importance in addressing palliative care needs. C_LIO_LIPerson-centred principles are critical to ensure that services reflect the varying information and care needs of this population. C_LI  Implications for Practice, Theory or PolicyO_LIA "one size fits all" approach to palliative care is unlikely to meet the needs of people with pulmonary fibrosis. C_LIO_LIProvision for remote real-time telephone or video contact is important for this group who, due to oxygen and other care needs, may find hospital visits challenging. C_LIO_LIMore work is needed to understand how palliative care services and approaches can best meet the needs of unpaid/family carers who support people with pulmonary fibrosis. C_LI
ER  -