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Idiopathic pulmonary fibrosis patients should be cared for within regional networks

The authors of a qualitative study of people with idiopathic pulmonary fibrosis (IPF) say there is a ‘clear need’ to establish properly funded regional IPF networks, similar to those used in cancer pathways.

Picture credit: SPL

Researchers from organisations in Manchester, including University Hospital of South Manchester NHS Foundation Trust, conducted a qualitative study of 17 patients between 2007 and 2012. Ten were receiving long-term oxygen therapy and ambulatory oxygen.

Three main themes were identified from interviews with the patients and six carers: the struggle to get a diagnosis; the sudden loss of the life they had known; and the difficulties of living with IPF. Participants reported that IPF affected every aspect of their lives, with no good treatment and few support structures.

Being cared for by specialist clinicians was helpful, as one patient indicated when describing his first visit to the specialist centre: The nurse understood more about my complaint than anyone Id seenit gives you confidence.

The authors conclude that experienced staff in properly funded regional networks could improve diagnosis and treatment. They add that interstitial lung disease

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Picture credit: SPL

Researchers from organisations in Manchester, including University Hospital of South Manchester NHS Foundation Trust, conducted a qualitative study of 17 patients between 2007 and 2012. Ten were receiving long-term oxygen therapy and ambulatory oxygen.

Three main themes were identified from interviews with the patients and six carers: the struggle to get a diagnosis; the sudden loss of the life they had known; and the difficulties of living with IPF. Participants reported that IPF affected every aspect of their lives, with no good treatment and few support structures.

Being cared for by specialist clinicians was helpful, as one patient indicated when describing his first visit to the specialist centre: ‘The nurse understood more about my complaint than anyone I’d seen…it gives you confidence.’

The authors conclude that experienced staff in properly funded regional networks could improve diagnosis and treatment. They add that interstitial lung disease specialist nurses could be the ‘main support’ for patients and co-ordinate the involvement of other clinicians.

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