Palliative Care and the Role of Clinical Nurse Specialist
This study explores the palliative care needs of patients with mesothelioma, and explores the role of Mesothelioma UK clinical nurse specialists in meeting those needs
Patients with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness, from diagnosis to the end of life. There is some evidence from the USA that specialist palliative care improves the quality of life of patients with palliative care needs and at the same time reduces health system costs and resource utilization. However, a multicentre randomised controlled trial in the UK and Australia has shown that early routine specialist palliative care for patients recently diagnosed with malignant pleural mesothelioma does not have any additional impacts on quality of life over standard care.
This study explores the palliative care needs, outcomes and experiences of patients with mesothelioma and their family carers. It also explores how Mesothelioma UK Clinical Nurse Specialists (CNSs) seek to meet these needs in terms of the interventions they employ, care they provide and the ways they work with other health care providers.
- Workstream 1
A literature review will be undertaken of existing peer reviewed evidence using academic databases such as Medline and CINAHL, to establish the quantity and type of evidence about the palliative care needs of patients with mesothelioma. Concurrently, we will conduct a secondary analysis of existing data to gain additional insight into palliative care needs and the barriers and facilitators patients and their family carers encounter. Existing data for secondary analysis will be drawn from three sources: (1) the 2012 National Mesothelioma Experience Survey of 652 patients conducted on behalf of Mesothelioma UK , (2) the 2019 Mesothelioma Outcomes Research & Experience (MORE) survey of > 500 patients, (3) qualitative data gathered as part of completed and ongoing research projects at the Mesothelioma UK Research Centre.
- Workstream 2
Design: Cross sectional mixed methods study involving and on-line survey and qualitative focus groups.
Sample: All Mesothelioma UK CNSs in post at the time the study commences and who consent to participation.
Data collection: With Mesothelioma UK we will collaborate to develop a short on-line survey to administer to all Mesothelioma UK CNSs to establish the range of service configurations in which they work, their caseloads and key socio-demographic characteristics.
We will then conduct focus groups with small groups of Mesothelioma UK CNSs in different regions to understand their support and development needs, the barriers and facilitators to palliative care they encounter, and their wider role in supporting, empowering and advocating for patients and carers.