Perceived Cancer Risk among Patients with Pancreatic Cysts: 187

Purpose: The natural history of pancreatic cystic neoplasms has not been clearly defined and currently available techniques are at times inadequate for differentiating premalignant cysts from benign cysts. Therefore, surveillance of these patients is of paramount importance. We conducted a questionnaire study to evaluate patients' knowledge of pancreatic cysts and their perceived risk of developing pancreatic cancer. Methods: Sixty-eight consecutive patients evaluated by EUS for a pancreatic cyst from 2005 to 2006 were contacted by telephone to administer the questionnaire. Their knowledge of the pancreas and pancreatic cysts was evaluated. Patients were asked to estimate their risk of developing cancer from the cyst over 5 years and if they believed surveillance was necessary. Based upon clinical and endoscopic parameters, each patient's risk of cancer was also estimated by three experienced gastroenterologists who were blinded to each other and patient responses. Following arrival at a consensus opinion regarding each individual's risk for cancer development the agreement in risk perception between patients and the expert panel was assessed by the weighted kappa statistic. Results: A total of 48 (71%) patients with pancreatic cysts were successfully contacted. Only 14 (29%) knew what the function of the pancreas was and 10 (21%) were able to identify the type of cyst they were diagnosed with. The three gastroenterologists completely agreed or had minor disagreement in 87% of cases and the kappa value between each pair of gastroenterologists ranged from 0.69 to 0.77 (good). Agreement between each patient and the expert panel's consensus cancer risk was mediocre (kappa of 0.30). Of 16 patients who believed their cancer risk was “zero”, the expert panel agreed in only 4 cases. Among 32 patients who had at least a “very small” risk of cancer and would be recommended to undergo surveillance, only 60% believed surveillance was necessary. Conclusion: The definitive diagnosis and subsequent treatment of pancreatic cystic neoplasms is still poorly defined. If resection is not performed, surveillance may be essential to protect from later cancer development. Most patients with these lesions do not have an adequate understanding of the pancreas or pancreatic cystic neoplasms. Furthermore, there is mediocre agreement between gastroenterologists and patients regarding their cancer risk. Patients' low perceived risk of cancer may have a negative impact on subsequent adherence to surveillance recommendations.