Palliative care in Interstitial Lung Disease
Research type
Research Study
Full title
Critically examining the experience of end of life care for people with interstitial lung disease: views of patients, families and healthcare professionals.
IRAS ID
276064
Contact name
Evelyn Palmer
Contact email
Sponsor organisation
The Newcastle upon Tyne NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Interstitial lung disease (ILD) is a general term for a varied group of conditions which lead to scar tissue forming in the lungs. Some types of ILD can be short lived and have a good prognosis. However, there are forms of ILD which cause progressive respiratory failure and have a poor prognosis. As with other chronic lung diseases, patients with ILD often have a very unpredictable trajectory at the end of their lives. Research has identified that this patient group has a high symptom burden often with very severe breathlessness towards the end of life, however, they access fewer palliative care services than patients with lung cancer.
The main aim of this project is to develop a better understanding of the experiences of end of life care for patients with ILD. This will involve in depth semi-structured interviews with patients with ILD, their carers or relatives, and also the respiratory specialists who are looking after them. The interview questions will focus on the patients’ and relatives’ experiences of palliative care and end of life care, what they felt was done well and what could be improved. The interviews for clinical staff will focus on factors that influence the timing of referral of patients to specialist palliative care services.
The information obtained from this project will influence the design and delivery of palliative care services for patients with ILD regionally and hopefully lead to opportunity in exploring this nationally.
The study will form the basis of an MD thesis for Dr Evelyn Palmer. The research will be supervised by a team of experienced researchers from Newcastle University and supported by colleagues with experience in respiratory medicine and palliative care.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
20/WM/0267
Date of REC Opinion
16 Nov 2020
REC opinion
Further Information Favourable Opinion