Experiences of patients with pancreatic cancer

Pancreatic Cancer UK commissioned Oxford Brookes University and Picker to conduct a UK-wide survey to understand the information and support needs of those affected by pancreatic cancer, and to explore their experiences of care.

The survey also captured patients’ awareness of Pancreatic Cancer UK, and perceptions of the information and support services that they provide.

The aims of the study were to:

• Increase understanding of the information and support needs of those affected by pancreatic cancer
• Measure patient experiences
• Measure patient awareness of Pancreatic Cancer UK and the charity’s information and support services
• Picker developed a survey tool to meet these aims, which was split into five sections looking at: diagnosis, treatment, information and support needs, awareness of PCUK and their services, and socio-demographic info.

The biggest current needs it found were:

• Symptom-related: bowel and digestion issues, fatigue/energy/sleep, pain management
• Treatment-related: better explanation of treatment options/timescales, improved post-treatment follow-up, timely results, improved care coordination
• Psychological: help to deal with anxiety/uncertainty and how to stay positive, someone to talk to, support for families
• Prognosis: clear and honest explanations, help to deal with fears
• Read the illustrated summary of results.

Read the full findings, as published on the BMJ open website.