A simple piece of paper, folded to slip into a wallet, may be a lifesaving tool for patients with bile duct cancer (cholangiocarcinoma). The Emergency Biliary Information Card, produced by in collaboration with The Cholangiocarcinoma Foundation, will help patients with bile duct cancers receive accurate and prompt treatment for a critical complication in the event they are away from their treatment team.
Cholangiocarcinoma is a rare diagnosis and as a result, community physicians outside of the specialized cancer care team may not be familiar with management of specific complications that can arise during treatment. One such complication—ascending cholangitis—is a potentially fatal bacterial infection of the biliary system, which requires immediate medical treatment. All patients with bile duct cancer are at risk for this infection. Patients with biliary stents, biliary drainage tubes, who have had endoscopic retrograde cholangiopancreatography (ERCP), or any medical procedure on the biliary tree, face highest risk.
The card instructs patients to seek urgent medical attention if they experience any of the following symptoms:
- Fever of 100.5°F / 38°C or higher
- Shaking chills
- Weakness
- New abdominal pain
- New jaundice (yellowing of eyes and skin)
Biliary patients can create and print their own card on The Cholangiocarcinoma Foundation website, adding their personalized information such as whether they have a biliary stent or drainage tube, and the names and contact information of their oncologists and gastroenterologist. “Having this tool on The Cholangiocarcinoma Foundation website, a well-known source for support and resources for biliary cancer patients, means patients all over the world can access and benefit from it,” says Renuka Iyer, MD, Co-Director, Liver and Pancreas Tumor Program and Section Chief of Gastrointestinal Oncology at Roswell Park.
Patients are asked to present the card to emergency medical personnel to serve as physician-to-physician communication regarding what the medical problem may be and how to treat it. The card also leads treating physicians to more information on the Cholangiocarcinoma Foundation website, which can be accessed by scanning the QR code printed on the card.
“The information on the card saves valuable time in diagnosing and treating biliary infection or obstruction in these high risk patients,” says Dr. Iyer. “The rarity of the condition and lack of experience in managing it can be a barrier to immediate diagnosis and treatment at health facilities that don’t deal with it regularly. This card helps educate both patients and emergency care providers, allows patients to take an active role in their care, aids physician-to-physician communication and most importantly, improves patient outcomes."