Nurses and other healthcare professionals have been urged to ask patients with pancreatic cancer to share the impact of the disease by completing a survey to help improve support in the future.
Pancreatic Cancer UK is asking healthcare professionals supporting people with pancreatic cancer to encourage patients to complete a survey about the physical and psychological impact of the disease.
“We have heard many times from people diagnosed that they haven’t had the support they need”
Patients will also be asked about their experiences of care and what they need from their care, to identify how this support could be improved in the future.
The charity said the new survey was vital because not enough was known about the specific care needs of people diagnosed with pancreatic cancer.
It described the survey as the first UK-wide opportunity to share the impact the disease had on life quality, and whether the care and information that patients received helped them to manage it.
The survey also aimed to highlight specific areas where there were gaps in care or information, and areas which need improving, said the charity.
Pancreatic Cancer UK said it hoped that support and information would then be developed and improved to better meet the needs of people with the disease.
It has commissioned Oxford Brookes University and healthcare research charity the Picker Institute Europe to conduct the UK-wide survey.
The questions will cover all aspects of care and ask about people’s physical and emotional support needs and how they are being addressed.
Patients will be asked about how they received their diagnosis, treatments given, management of symptoms and side effects, written information received and the attitudes of clinicians treating them.
“Without hearing from patients across the UK, the full picture is hidden from us. That’s why this survey is so important”
Anna Jewell, director of operations at Pancreatic Cancer UK, said: “Sadly, we have heard many times from people diagnosed that they haven’t had the support they need to help them cope with the impact of the disease on their daily lives.
“But without hearing from patients across the UK, the full picture is hidden from us,” she said. “That’s why this survey is so important – it will show us in detail for the first time what support and information people with pancreatic cancer need to help them manage the impact of the disease, and whether their needs are being met.
“We hope this will lead to improvements in these areas in the future,” she said. “We also aim to better tailor our own services for people with pancreatic cancer following on from the survey.
She added: “We would like to thank healthcare professionals in advance for asking their patients to take part in the survey.”
Patients can take part in the survey online or by calling 01865 208108. To receive hardcopies from participating hospitals, email firstname.lastname@example.org