Physical and psychological support patients with the deadliest common cancer are not being met according to the first ever UK survey into the experiences of people with pancreatic cancer.
Commissioned by leading charity Pancreatic Cancer UK and conducted by Picker alongside Oxford Brookes University, the survey revealed that half of all respondents (49 per cent) had one or more unmet support needs considered either high or moderate in severity. The findings show a clear gap in the supportive care being offered to pancreatic cancer patients – a group which the charity believes has been neglected for decades.
The survey recorded the care experiences and support needs of 274 people with pancreatic cancer. The majority (87 per cent) reported one or more support needs, ranging from depression, fatigue, and financial pressures, to changes to appetite. Pancreatic Cancer UK is concerned that a significant proportion of these needs are not being met. It is now calling for the Government and NHS to introduce a holistic needs assessment to ensure that patients have access to personalised care immediately after diagnosis.
One survey respondent said:
“I was not offered counselling though I really felt I needed it. My physical needs were very well met but my emotional needs have never been addressed. I had no idea where to go for the help I needed and had to search online for information.”
Patients reported that psychological care needs were the most likely to be unmet; almost a third said fears about the future (31 per cent) or fears about the cancer spreading (30 per cent) were not being addressed. This is extremely concerning as pancreatic cancer has the lowest survival of all common cancers – less than 7 per cent of people living for 5 years – and the second highest risk of suicide after diagnosis compared to other cancers. This risk of suicide is higher in the first six months of diagnosis and particularly for patients whose cancer had spread to other organs, underlining the importance of patients receiving specialist psychological care as early as possible.
Currently there are no established psychological interventions for people with pancreatic cancer due to a lack of evidence, and the NICE guidelines on the disease cite this as a key area for improvement. The charity is urging 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.
Most patients were positive about the care they received, however, the findings indicated key differences between the experiences of people who were eligible to receive surgery, the only potentially curative treatment for the disease, and those whose pancreatic cancer was inoperable. People with operable pancreatic cancer were more likely to feel that their diagnosis had definitely or to some extent been given in a sensitive way (87 per cent), compared to inoperable patients (74 per cent). Similarly, 37 per cent of people with inoperable pancreatic cancer reported that they had not been given enough information at the point of diagnosis, compared to 27 per cent for people with operable disease.
The extent and breadth of needs and the variations in care experienced by people with pancreatic cancer has previously gone unreported because they are not all captured by the National Cancer Patient Experience Survey (NCPES). The NCPES is distributed within six to nine months of diagnosis when many people with pancreatic cancer have already died or are too sick to respond. The low number of responses mean that pancreatic cancer is grouped with Upper Gastrointestinal (UGI) cancers. The NCPES also does not capture the experience of those living beyond their diagnosis and treatment.
Anna Jewell, Director of Services at Pancreatic Cancer UK, said: “For so many pancreatic cancer patients to tell us they have unmet support needs is heart-breaking – these are live needs which if left unaddressed can have a huge detrimental impact on their quality of life. Pancreatic cancer is a complex disease that can progress devastatingly quickly, often leaving those affected with little time with their loved ones. We want to see support needs assessed for all pancreatic cancer patients immediately after diagnosis so that they can be helped to maintain as good a quality of life as possible.
No one affected by pancreatic cancer should be left to struggle in isolation. Specialist support is available through the Pancreatic Cancer UK Support Line. Our dedicated team of nurses are there to help patients and their families but we need fellow health professionals to signpost them to us.
The needs of pancreatic cancer patients have been neglected for far too long. It’s imperative that these findings now prompt further research into the most effective interventions, particularly around mental health, so that people with pancreatic cancer receive the very best care and support.”
Amy Tallett, Head of Research at Picker, commented:
“Picker is proud to have worked with Pancreatic Cancer UK and Oxford Brookes University on this important research, and we hope that the findings provide an essential evidence base to inform continued conversation and actions to improve care experiences for people affected by pancreatic cancer. Thank you to everybody that took part in this research.”
Eila Watson, Professor Supportive Cancer Care at Oxford Brookes University, said: “This survey highlights the unmet information and support needs that pancreatic cancer patients have across the cancer trajectory. Needs should be assessed from the point of diagnosis and monitored regularly, with supportive care interventions implemented to help patients live as good a quality of life as possible. Further research is needed to work out how best to support patients and their families.”
- Pancreatic Cancer UK operates the only dedicated support line for people affected by pancreatic cancer staffed by specialist nurses. The Pancreatic Cancer UK Support Line is free to call on 0808 801 0707 with support available on weekdays 10am-4pm and via email: firstname.lastname@example.org
- For further information and to find out more about Pancreatic Cancer UK, contact: Senior Media Manager Chris Gerrard on email@example.com Media Officer Lizzie Hubbard on firstname.lastname@example.org or 020 3780 7760. For urgent queries out of office hours, call 07469 660 633.
- 274 people with pancreatic cancer were recruited directly through NHS centres (Manchester, Northumberland & Newcastle, London, Thames Valley area and Glasgow) and through physical and electronic copies of the survey distributed by Pancreatic Cancer UK, Oxford Brookes University and Picker Institute Europe. The survey was open between January and May 2018