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.
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
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