- What are the experiences and perspectives of people with suspected or confirmed pancreatic disease on the process of being diagnosed and treated?
- What considerations do they raise or describe as important when making decisions around undergoing diagnostic investigations and/or treatment?
- How do they describe their ability to access diagnosis and timely treatment?
This review identified 1,342 citations and included 17 publications reporting on the results of 15 studies on peoples experiences of engaging in the diagnosis and treatment of pancreatic diseases. With a focus on pancreatic cancer, the included studies provided limited information about those with suspected or diagnosed acute or chronic pancreatitis. Additionally, the included studies provided limited information on diagnostic testing and decision-making. The key findings from this review are: Many who were investigated for suspected pancreatic cancer became aware of their symptoms over time, seeking medical care once their symptoms worsened and they could no longer explain them or self-manage them. People with a familial risk of pancreatic cancer saw engaging in surveillance as a way of doing something to prevent cancer. Some questioned the tests and the usefulness of their results, and all found waiting for results a time fraught with worry. Receiving a diagnosis of pancreatic cancer was often a shock and emotionally charged. For those diagnosed with acute pancreatitis, a formal diagnosis was found to be comforting and helped them self-manage their condition. People who had received diagnosis of pancreatic cancer placed their trust in and deferred to their physicians treatment recommendations. People with a diagnosis of pancreatic cancer found it important to continually find ways to be optimistic and have hope in light of their prognosis. In the face of a poor prognosis of pancreatic cancer, people had varying views on when and how to decide to stop active treatment. Once discharged from care, people were left feeling that they were no longer supported.