A qualitative study of patient and clinician attitudes regarding surveillance after a resection of pancreatic and peri-ampullary cancer.

BACKGROUND: After surgical resection of pancreatic adenocarcinoma, most patients will develop recurrence within 2 years. Intense follow-up is often recommended; however, its impact on survival is unknown. Patient and clinician attitudes towards follow-up were qualitatively assessed along with the perceived benefits and challenges.

METHODS: A semi-structured interview guide was developed. Purposive sampling identified patients who were in active surveillance or had developed recurrence. Clinicians involved in patient care were also interviewed. Interviews were conducted until saturation was reached and themes were derived using standard qualitative methods.

RESULTS: A total of 15 patients and seven clinicians were interviewed. Patient themes included a limited understanding of disease prognosis, a desire for reassurance, a desire to know if and when recurrence occurred and minimal difficulties with follow-up. Clinician themes included expectation that patients are aware of the recurrence risk, a desire to provide reassurance, support for intense follow-up and perceived patient challenges in follow-up. Overall, the dominant theme was one of disconnect between patients and clinicians in the understanding of the disease and its prognosis.

DISCUSSION: Patients have an intense need for reassurance and obtain this through follow-up appointments with their oncologists. Consequently, they express few difficulties with the process. Clinicians recognize this desire for reassurance. Patients' understanding and expectations contrast starkly with clinicians' perspectives regarding prognosis.