The I-Qual-PPC project
Improving the Quality and value of care for people with Poor Prognosis Cancers
When discussing medical options, patients with poor prognosis cancer (PPC) palliative anti-cancer treatment may not always be the best option due to co-morbidities, frailty or patient preferences. When treatment is the best option a patient may be offered “best supportive care” (BSC), a support system which is sometimes not properly clinically defined and shows significant variations in practice and patient experience in Scotland. Without a complete understanding of the demographic and clinical implications that BSC and palliative care can lead to, honest discussions around treatment options are particularly challenging.
Patients are at increased risk of over-medicalisation (Ho T.H. et al, 2011 and Lightbody C.J. et al, 2018) and recent data from South East Scotland have demonstrated that people in their last phase of life from disadvantaged communities are more likely to experience crisis admissions to hospital (Murray S. et al, in write-up). There is a significant lack of linked data for PPC and recently published predictions show that palliative care needs can grow by up to 20% in 2040 (Anne Finucane et al, 2021).
A data linkage analysis funded by the Health foundation was recently conducted by Katharina Diernberger et al, aiming to investigate the NHS admission and economical patterns of the last year of life for cancer patients in Scotland. Admission rates were found to increase during the last month of life, particularly for haematological and lung cancers. Admission costs decrease with age, and were mostly driven by unscheduled admissions. Although this study brings valuable information in understanding admission patterns for patients affected by cancers in Scotland, additional work is necessary to better establish the current value-based care received by these patients and how it can be improved. It is in this context than I-Qual-PPC was designed.
The I-Qual-PPC project is a patient-centered study which aims to re-evaluate current palliative care and BSC guidelines, ultimately improving patients experience and NHS resources.
This project is divided in two parts:
- A qualitative investigation, where patients with PPC, their close ones and healthcare professionals will conduct free talk interviews to share their personal experiences during their medical journey
- A quantitative investigation where real-world data from a range of national and regional datasets will be analysed to describe the current clinical pathways and outcomes in detail
This study will better describe characteristics (clinical and demographic) of the PPC population in South East Scotland and aims to create clinical guidelines which will reflect patients priorities described in the qualitative part of the project.
- What are the clinical and demographic characteristics of the PPC population in SE Scotland who have advanced (stage IV) cancer at diagnosis, and/or who do not receive cancer treatment (BSC population)?
- What are the clinical pathways and outcomes for PPC patients, including inpatient admissions, outpatient appointments, emergency care contacts, attendances for diagnostic tests and invasive procedures, day-case treatments and prescription medications, and how does this differ for patients receiving cancer treatment and those who do not?
- What are the benefits and burdens of palliative cancer treatments and BSC, as described by people with PPC and those close to them?
- What are the economic costs associated with healthcare utilisation for people with PPC who undergo palliative cancer treatments and those who are for BSC?
- Can patient populations be identified who are at greatest risk of low value care?
We are based at the University of Edinburgh Palliative Care Research Group and the Edinburgh Cancer Research Centre, University of Edinburgh.
Prof Marie Fallon (Principal Investigator) – St Columba’s Hospice Chair of Palliative Medicine.
Dr Joanna Bowden (Co-Principle Investigator) – Consultant in Palliative Care, NHS Fife.
Dr Peter Hall (Co-Principle Investigator) – Reader in Oncology, Health Economics and Cancer Informatics.
Dr Mahéva Vallet (Senior Research Manager) – Edinburgh Cancer Informatics.
Dr Giovanni Tramonti (Data Scientist, Health Economist) – Edinburgh Cancer Informatics.
For more information contact firstname.lastname@example.org