Patient Survey findings
Please note this page contains statistics about the patient experience of people with pancreatic cancer. These are general statistics for large groups of people, so they can't tell you what will happen in your own case or that of a loved one.
In 2018, we commissioned Oxford Brookes University and the Picker Institute to undertake a Patient Survey, measuring the experience and supportive care needs for people with pancreatic cancer. This is the first time in the UK, we are able to understand these needs for people living with and beyond pancreatic cancer and is imperative for people with the disease who are often diagnosed late and experience severe symptoms affecting their wellbeing and survival.
Although a positive experience of patient care and early supportive care have proved beneficial for quality of life, treatment success and survival for other cancers, supportive care needs for people with pancreatic cancer in the UK have not been explored until now.
The survey was completed by 274 people living with and beyond pancreatic cancer.
A significant proportion of people with pancreatic cancer expressed a negative experience in terms of the level of information given and how diagnosis was communicated.
This was more profound among people with a worse prognosis, i.e. people who will not be able to have surgery (inoperable).
A quarter of inoperable patients felt that their diagnosis was not given in a sensitive way.
"[The diagnosis was] delivered by a junior doctor who avoided eye contact and rushed away after".
"Possible surgical and treatment options were not given. Sounded like a death sentence only".
Supportive Care Needs
87% of people (193) reported having one or more physical and psychological supportive care needs
Digestion issues, tiredness/lack of energy and changes in appetite/weight were the most common physical care needs.
Importance of dietary support and access to a dietitian was important to meet physical care needs.
Uncertainty about the future and fears about cancer spreading were the most common psychological care needs for people with pancreatic cancer.
Most importantly these needs were often reported as the most common unmet needs.
We will share these findings with all pancreatic cancer community – clinical and nursing practitioners, NHS healthcare commissioners and providers and Governments across the UK to ensure that everyone with pancreatic cancer receives the best care standards as recommended in the NICE Guidelines for pancreatic cancer and as outlined in the Pancreatic Cancer UK Patient Charter.
We will work with clinical specialists and NHS commissioners so that people with pancreatic cancer have immediate access to early supportive care for physical and psychological needs, such as access to diet and psychological specialists to ensure prescription of Pancreatic Enzyme Replacement Therapy (PERT), information on how to take it correctly and support to meet their psychological needs.
We will ask the Governments and NHS across the UK to develop a specific for pancreatic cancer quality of life metric and a personalised care service for people with pancreatic cancer that will offer a holistic needs assessment straight after diagnosis. This will ensure that everyone with pancreatic cancer will have access to the support they need.
We will put pressure on the NHS cancer policy and intelligence teams across the country to develop a publicly available dataset on holistic needs assessment and quality of life outcomes for pancreatic cancer to benchmark, track progress and inform implementation of personalised care for people with pancreatic cancer.
We will ask research bodies such as the National Institute for Health Research (NIHR) to prioritise and invest research funding for the development of psychological interventions for people living with and beyond pancreatic cancer aligned with the top 10 research priorities of the National Cancer Research Institute (NCRI). This will be a step forward towards developing strong evidence that will inform the future development of the NICE Quality Standard on pancreatic cancer which has identified finding effective psychological interventions as key to drive improvements in pancreatic cancer care and is currently a placeholder.