CF patient experiences - lung transplant and palliative care
Research type
Research Study
Full title
Adult CF patients’ experiences of discussions regarding advanced disease management including lung transplant and palliative care.
IRAS ID
197702
Contact name
Gill Mein
Contact email
Sponsor organisation
St George’s University of London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Cystic Fibrosis (CF) is the most common, life limiting recessively inherited disease in the UK. There have been improvements in the treatment of this condition which means people with CF can expect to live longer, however predicted survival is still only 40 years of age and the average age at death is only 28 years old (CF Trust, 2015). \nThe terminal stages of CF can be difficult to recognise as the person may have repeated bouts of severe illness which they recover from and the potential for lung transplant may alter the disease outcome (Conway et al., 2014; Braithwaite et al., 2008).\nEarly discussion of lung transplantation and palliative care is advised but previous research has found that this may not occur. Palliative care includes symptom management as well as psychological/emotional support. Previous work has been done asking people with CF about their views on palliative care but this has been done in other countries (Australia) or some time ago (Braithwaite et al., 2011; Chapman et al., 2005) and there has been no research asking people with CF about how, when and in what format they would like to start discussing lung transplantation or accessing palliative care. \nThis project will ask people with CF at one specialist CF centre in London about their experiences of lung transplant discussions and palliative care. The data will be collected through semi-structured interviews.\nAll adult people with CF and experience of lung transplant discussions or palliative care at a single specialist centre in London, will be invited to take part in the project. The interviews will take place at the specialist centre away from the usual clinical area and participants will attend for a one hour long interview. \nAll interviews will be audio recorded and the transcripts will be analysed for themes. \n
REC name
London - Westminster Research Ethics Committee
REC reference
16/LO/0519
Date of REC Opinion
6 May 2016
REC opinion
Further Information Favourable Opinion