Nursing literature regarding cholangiocarcinoma is scarce. Studies that focus on nursing care, symptom management, and nursing management of patients with biliary obstruction are needed. Nutrition and palliative care management of patients with cholangiocarcinoma are key areas of nursing management.

Background: Biliary obstruction often occurs with hepatobiliary cancers. Treatment consists of internal biliary stents or external biliary drains. Patient education regarding signs and symptoms of cholangitis, change of stents, or care of biliary drains is both critical and challenging. The Nursing Advisory Board of the Cholangiocarcinoma Foundation (CCF) found patient questions regarding stents and drains posted on the CCF website. Quality of life is impacted by treatment complications as well as lack of knowledge regarding living with stents or drains. Aim: To compare stent and biliary drain patient education practices of NCCN Member Institutions across the United States. Methods: A 40 item information survey was sent to the NCCN Member Institutions by email. Intended respondents were nursing or health professionals who provided patient instruction regarding biliary stents drains. The survey was sent to interventional radiology and endoscopy departments. It included questions regarding demographics of respondents, patient education and instructions, supplies provided, signs and symptoms to be reported, and follow-up appointments. Results: There were 26 survey responses. Of the 26 responses, 23 responses were complete. Patient education regarding stents or drains was predominantly completed by registered nurses (74%), or nurse practitioners (26%). The largest number of respondents practiced in interventional radiology (52%), endoscopy (13%), and other (30%), which included gastroenterology, or surgery. Verbal and written instructions were provided by 87% of NCCN centers. There was variation in survey responses regarding biliary drains. Survey responses regarding biliary stents were more cohesive. A schedule for stent change was provided by 75% of NCCN Member Institutions, although there was variation on length of time between stent exchanges. The majority of patients at these institutions receive education regarding signs and symptoms to report (95%). Conclusion: Discharge instructions to patients with external drains are inconsistent. Although there is some agreement among NCCN Member Institutions, the schedules for stent change vary. Patient education and instruction is predominantly provided by nurses and NPs. The importance of teaching signs and symptoms to report is evident in this sample. Standardized patient instructions post stents or external biliary drains may enable patients to care for drains and will help nurses and NPs reinforce consistent education.

65 Background: Cholangiocarcinoma (CC) accounts for approximately 3% of all gastrointestinal cancers and have a poor incident to mortality rate. The incidence in the United States (US) is 2,000-3,000 cases annually, with this rate steadily increasing during the last twenty years; this trend is not solely observed in US but also seen in Europe, Australia and Japan. The highest incidence is seen in Southeast Asia due to parasitic infection. CC presents many challenges to healthcare professionals due to the anatomic nature of CC (Lowe et al, 2015). The worldwide increase in incidence of CC is indication for the essential development of nursing practice guidelines underpinned by expert evidence and knowledge and regarding the key aspects of care. Methods: A collaboration of nursing professionals representing major cancer research institutions from around the country and the United Kingdom worked together to identify key aspects of care, the aim being to develop Clinical Nursing Practice Guidelines. The process included an exhaustive literature review using Pubmed, Uptodate, Medline, and CINAHL databases; submission of respective institutional practices; group consensus on guideline content, evidence-based scoring assignment and approval by the Cholangiocarcinoma Medical Advisory Board. Results: The guidelines developed include the care of the patient: (1) with external biliary drains and internal bile duct stents, (2) with intractable nausea and vomiting resulting from disease process, (3) with fatigue resulting from disease process, (4) undergoing chemotherapy, (5) undergoing photon radiation, (6) undergoing radiation on a clinical trial, and (7) preparing for liver transplantation. The purpose of the guidelines are to advance the scientific knowledge of the symptoms experienced, quality of life of patients with CCA, establish standards in patient care, and improve quality of care and satisfaction for patients diagnosed with CC. Conclusions: Creation of evidence-based guidelines will provide a springboard for expanded competent knowledge and a model to test for improvement in the care and quality of life of the patient with CC.