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01.12.2015 | Research article | Ausgabe 1/2015 Open Access

BMC Pulmonary Medicine 1/2015

The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study

BMC Pulmonary Medicine > Ausgabe 1/2015
Cathy Sampson, Ben Hope Gill, Nicholas Kim Harrison, Annmarie Nelson, Anthony Byrne
Wichtige Hinweise

Electronic supplementary material

The online version of this article (doi:10.​1186/​s12890-015-0145-5) contains supplementary material, which is available to authorized users.

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

All authors contributed substantially to manuscript drafting and revision and approved the final version. AB is corresponding author and also contributed to the study design and data interpretation. BH-G and NKH contributed substantially to data collection, AN to study design and data interpretation, and CS to data collection and interpretation.



Idiopathic pulmonary fibrosis (IPF) is a chronic, fibrotic interstitial lung disease of unknown origin. It has a median survival of three years but a wide range in survival rate which is difficult to predict at the time of diagnosis. Specialist guidance promotes a patient centred approach emphasising regular assessment, information giving and supportive care coordinated by a multidisciplinary team (MDT). However understanding of patient and carer experience across the disease trajectory is limited and detailed guidance for MDTs on communication, assessment, and triggers for supportive and palliative interventions is lacking. This study addresses uncertainties relating to care needs of patients and carers at different stages of the IPF disease trajectory.


Following ethical approval a multi-centre mixed-methods study recruited participants with IPF at four stages of the disease trajectory. Qualitative analysis was used to analyse 48 semi-structured interviews with patients (27) and paired carers (21).


Patients and carers outlined key elements of MDT activity capable of having significant impact on the care experience. These were structured around:
  • Focus of clinical encounters
  • Timely identification of changes in health status and functional activity
  • Understanding of symptoms and medical interventions
  • Coping strategies and carer roles.


Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. In depth analysis of the experiences of patients and carers offers guidance for refining IPF clinical pathways. This will support patients and carers at key transition points in line with National Institute for Health and Care Excellence (NICE) guidance.
Additional file 1: COREQ guidelines. (DOCX 285 kb)
Additional file 2: Box 1. Key themes. (DOCX 11 kb)
Additional file 3: Box 2. Communication Skills. (DOCX 12 kb)
Additional file 4: Box 3. Context. (DOCX 13 kb)
Additional file 5: Box 4. Monitoring disease progression. (DOCX 12 kb)
Additional file 6: Box 5. Negotiating disease progression. (DOCX 13 kb)
Additional file 7: Box 6. Diminished possibilities. (DOCX 12 kb)
Additional file 8: Box 7. Specific concerns. (DOCX 12 kb)
Additional file 9: Box 8. Patients. (DOCX 11 kb)
Additional file 10: Box 9. Carers. (DOCX 13 kb)
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