Exploring patient experiences of surveillance for pancreatic cystic neoplasms: a qualitative study.

Background: Pancreatic cystic neoplasms (PCN) are considered premalignant conditions to pancreatic adenocarcinoma with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves surveillance to assess for cancerous progression. Little is known about patients' experience and the impact of living with surveillance for these lesions.

Aims: To explore the experiences of patients living with surveillance for PCNs.

Methods: Semi-structured qualitative interviews were conducted with patients under surveillance for pancreatic cystic neoplasms in the UK. Age, gender, time from surveillance and surveillance method were used to purposively sample the patient group. Data were analysed using reflexive thematic analysis.

Results: A PCN diagnosis is incidental and unexpected and for some, the beginning of a disruptive experience. How patients make sense of their PCN diagnosis is influenced by their existing understanding of pancreatic cancer, explanations from clinicians and the presence of coexisting health concerns. A lack of understanding of the diagnosis and its meaning for their future led to an overarching theme of uncertainty for the PCN population. Surveillance for PCN could be seen as a reminder of fears of PCN and cancer, or as an opportunity for reassurance.

Conclusions: Currently, individuals living with surveillance for PCNs experience uncertainty with a lack of support in making sense of a prognostically uncertain diagnosis with no immediate treatment. More research is needed to identify the needs of this population to make improvements to patient care and reduce negative experiences.