Title: Critically examining the experience of end of life care for people with interstitial lung disease: views of patients, families and healthcare professionals
Funder: Marie Curie

Abstract: Background: Progressive fibrotic interstitial lung disease (PF-ILD) is associated with a poor prognosis, high symptom burden and complex palliative care needs. However, patients with PF-ILD access fewer palliative care services than patients with lung cancer and are reported to have substantial unresolved symptoms at the end of life. There is a paucity of research considering the end of life care received by patients with PF-ILD. Methods: Intensive semi-structured interviews with patients, bereaved carers and healthcare professionals will be conducted to explore the experience of end of life care with PF-ILD and understand barriers which prevent patients accessing specialist palliative care services. Data analysis will be conducted using a constructivist grounded theory approach. Results: The results of this study will directly influence the delivery and organisation of end of life care for patients with PF-ILD in the region. The study will identify barriers to referral and access to specialist palliative care services and establish whether there is geographical disparity across the region. Data will be used to examine to what extent the experience of end of life care differs depending on geographical area, place of death and access to palliative care resources. Conclusions: The data will be used to develop a theoretical framework that captures the experiences of dying from ILD in the North East and Cumbria and patient access to palliative care services.

Lay abstract: Interstitial lung diseases (ILDs) are a varied group of conditions which lead to fibrosis or scarring in the lungs. Some types of ILD cause progressive respiratory failure and have a poor prognosis. Idiopathic pulmonary fibrosis (IPF) is the most common type of ILD to cause progressive fibrosis and each year 6,000 people are diagnosed with this condition. On average people with IPF only live 3 years after diagnosis, a prognosis worse than many cancers. Patients with ILD have a high symptom burden often with very severe breathlessness towards the end of life. The project aims to explore patients’ and relatives’ experiences of end of life care with ILD and examine to what extent the experience of end of life care differs depending on geographical area, place of death and access to palliative care resources. The study will also review barriers preventing access to specialist palliative care services from patients’ and relatives’ perspective and explore healthcare professionals view on barriers to referring patients to specialist palliative care services. Data will be collected through semi-structured interviews with patients with ILD, bereaved carers of people with ILD, and also healthcare professionals. Purposive sampling will be used to ensure we speak to people who represent the experiences of the whole ILD patient population. 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.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES;7.3 MANAGEMENT AND DECISION MAKING
Health categories: RESPIRATORY