About the Project
Cancer incidence is increasing year on year, as are survival rates, leading to an increasing prevalence of people living for many years after a cancer diagnosis and treatment. There are approximately 2 million people in the UK living with and beyond cancer and this is expected to rise to 4 million in 2030. Research suggests that 1 in 4 cancer survivors have one or more treatment related consequences affecting their quality of life and approximately 1-5% have severe symptoms needing multidisciplinary specialist help.
While information about survival rates are routinely collected for all cancers patients, either using the cancer registry or in research, we have little information of the quality of life people have after their treatment. Without this information healthcare professionals cannot adequately plan for patients needs.
NHS England has highlighted the importance of collecting quality of life data in a section devoted to living with and beyond cancer in taking the cancer strategy forward document.
Patient reported outcome measures
Quality of life is a complex concept spanning multiple domains including physical, mental and social well being. These are not well collected using our normal medical model.
Patient reported outcomes measures (PROMs) are valuable tools to collect data on quality of life. These are validated measurements that collect data directly from the patient about their wellbeing without interpretation from a clinician.
NHS England have recently announced their commitment to create the ‘Quality of life matrix’ in the form of a dashboard using two PROMs with pilot sites across the country taking on this challenge very soon.
The idea of this project is to look at the feasibility of collecting radiotherapy PROMs. The emphasis is on developing a system that can be used at scale, routinely, in multiple centres across the UK.
For this pilot, we have chosen to start with patients who have undergone pelvic radiotherapy, where there is evidence that symptoms have an impact on generic quality of measures (EQ-5D), vary according to quality and type of treatment and for which there are effective interventions. We also wanted a more targeted tool that was short and easy to use which is often not the case with PROMs.
We will use a validated screening tool (ALERT-B) which consists of three simple questions about bowel side effects following pelvic radiotherapy that could be easily used by a variety of allied health professionals. Guidance on management of symptoms is available through peer reviewed publication and Macmillan patient advice literature.
This project brings together existing resources and information, and makes them relevant and accessible via an online platform, as well as collecting data on toxicity. We will evaluate whether the ALERT-B questionnaire can be used to help identify patients that need intervention for bowel toxicity following pelvic radiotherapy, examining rates of electronic system sign-up, baseline completion and completion at 6 months.
How to join this project
Based on questions we have had from a few people:
- Trigger uses ALERT-B to capture PROMS in patients having pelvic radiotherapy. ALERT-B is now part of the NHSE Radiotherapy Specification, and is a validated tool for assessing PROMS in this patient group. Trigger is not a clinical trial (we have a letter from a REC confirming this) but is a service evaluation project.
- We are using a secure online platform; sign-up and data entry is led by patients (although can be supported by family members, staff, etc.).
- There is a cost, which covers the cost of the online platform, and a small amount of analyst and co-ordination time.
If you are keen to join the project or have further questions, please feel free to contact us and we'll reply as soon as possible.