Project Duration
December 2013 - November 2018
Funder
EU 7th Framework Programme
Project Staff
- Kristian Pollock (PI)1
- Glenys Caswell 1
- Ellie Wilson1
- Jane Seymour4
- Andrew Wilcock (CI)2
- Professor Christina Faull (PI)3
Staff Institutions
- The University of Nottingham
- Nottingham University Hospitals NHS Trust
- Consultant in Palliative Medicine LOROS, Hospice care for Leicester, Leicestershire and Rutland and University Hospitals of Leicester
- University of Sheffield
Aims
Primary aim:
- To assess whether an advance care planning (ACP) intervention (Respecting Choices) improves the quality of life and symptoms of patients with advanced cancer.
Secondary aims:
- To assess the effect of an ACP intervention on the quality of life and symptoms of patients with advanced cancer in different sub-groups (gender, age, socio-economic status, class, country).
- To assess the effect of an ACP intervention on the extent to which care as received is in line with patients preferences, on patients evaluation of the quality of the decision making process, on the quality of dying of patients with advanced cancer, and on the relatives wellbeing.
- To gain insight into how patients, their relatives and professional caregivers experiences their involvement in ACP.
- To assess the cost effectiveness of ACP.
Methods
The research is taking a mixed methods approach, involving a cluster randomised control trial and a detailed qualitative study, to explore the experience and impact of delivering and receiving an ACP intervention (Respecting Choices). Patients with lung and colorectal cancer will be invited to participate in the research. The study will also be exploring the views of professional and lay caregivers.
Cluster randomised trial:
Twenty hospitals across the six participating EU countries will be randomised to provide either care as usual or the Respecting Choices ACP intervention. Data will be collected longitudinally from participants to explore the impacts of the intervention. At the end of the study we will examine medical records to see how ACP is recorded and whether participating in the Respecting Choices intervention affects the care that is delivered to patients.
Qualitative study:
Patients, lay-carers, and professional caregivers will be invited to discuss their experiences of receiving the intervention with a researcher. We will interview people in at least three of the countries participating in the study so that we can gain a cross-cultural understanding of the experience of ACP. We will run focus groups with the professionals who deliver the Respecting Choices intervention to explore their experiences. Some of the Respecting Choices interventions will be recorded, both to ensure the quality of the intervention, and to undertake qualitative analysis of the content of these conversations.
Stage of Development
Recruitment for the cluster randomised trial, which began in July 2015, has been completed at the control (University Hospitals of Leicester) and intervention (Nottingham University Hospitals NHS Trust and Sherwood Forest Hospitals NHS Foundation Trust) sites. The collection of follow up data, in the form of questionnaires and medical file checks, has been completed.
Recruitment and data collection for the qualitative study has also been completed. Qualitative data analysis is proceeding in collaboration with colleagues in Italy, Netherlands and Slovenia with the expectation that papers will be published from study during 2019.