A qualitative study of patient and clinician attitudes regarding surveillance following resection of pancreatic and periampullary cancer.

Abstract

339 Background: Pancreatic carcinoma is the fourth leading cause of cancer death in North America. Following surgical resection, most patients will develop recurrence within two years. Intense follow-up is often recommended; however, the impact on survival is unknown. We sought to qualitatively assess patient and clinician attitudes towards follow-up and the perceived benefits and challenges. Methods: The research team developed a semi-structured interview guide. Purposive sampling identified patients who had undergone curative attempt resection and were in active surveillance or had developed recurrence. Clinicians involved in patient care were also interviewed.Themes were derived using standard qualitative methods. Results: Fifteen patients and seven clinicians were interviewed. Patient themes included (1) Limited understanding of disease prognosis; (2) Desire for reassurance through follow-up; (3) Desire to know if and when recurrence occurred; (4) Challenging treatments; (5) Minimal difficulties with the follow-up protocol; and (6) Limited role of family doctors in pancreatic cancer follow-up. Clinician themes included (1) Expectation that patients are aware of recurrence risk; (2) Desire to provide reassurance to patients; (3) Support for intense follow-up protocol despite lack of supporting evidence; (4) Secondary goals for surveillance; (5) Perceived patient challenges in follow-up; (6) Openness to family doctors doing follow-up. Overall, the dominant theme was one of disconnect between patients and clinicians in the understanding of the disease and its prognosis. Conclusions: Patients with pancreatic or periampullary cancer have an intense need for reassurance and obtain this through the follow-up process. Consequently they express few difficulties with follow-up despite the intensity of testing. Oncologists recognize this desire for reassurance and provide it through follow-up despite the lack of evidence to show benefit. There appears to be a disconnect between patients and clinicians in the understanding of the disease and its prognosis suggesting further work is needed to improve patient-physician communication.