The project seeks to develop materials explaining chemotherapy regimens for patients with biliary tract cancers and then translate these materials into “standardized, high-quality, free, and easily accessible resources."
A European-led effort will make educational information on treatment for cholangiocarcinoma available in multiple languages, including those spoken in low- to middle-income countries that currently lack such documents for patients, according to a letter appearing in Lancet Oncology.
The European Network for the Study of Cholangiocarcinoma (EURO-CHOLANGIO-NET) has launched the BABEL project, according to Raffaella Casolino, MD, and Chiara Braconi, MD, PhD, both of the Institute of Cancer Sciences, University of Glasgow.
The project seeks to develop materials explaining chemotherapy regimens for patients with biliary tract cancers and then translate these materials into “standardized, high-quality, free, and easily accessible resources” that will make it easier for patients to speak with health care providers.
Those still comparatively rare, cholangiocarcinoma is becoming more common. Patients in certain Southeast Asian countries are at higher risk; for example, certain endemic infections linked to cholangiocarcinoma are common in Thailand and cases of typhoid and gallstones—also linked to the cancers—are more common in India. Thus, the authors wrote, it is especially important to produce educational materials for patients in regions where biliary tract cancer is more common.
The authors said they especially hope the educational project will help patients in lower-middle-income countries, where 70% of cholangiocarcinoma cases and deaths occur. The participants also saw a need to help immigrants who face language barriers.
First, the EURO-CHOLANGIO-NET working group produced leaflets in English with explanations of common chemotherapy regimens. Then 83 volunteers were recruited from scientific societies to translate the documents, with representatives from 21 countries joining the effort. Most were early career physicians or scientists; 82% were younger than 40 years and 65% were from the lower-middle-income countries the project sought to reach.
Between October 2021 and January 2022, the materials were translated into 31 languages, including the top 10 languages spoken worldwide. “Although there are more than 7000 recognized languages globally, more than half of the world’s population speaks 1 of 10 languages as their native tongue, and many additional hundreds of millions of people speak them as second languages,” the authors wrote.
The project’s leaders say they feel it will go a long way toward closing the information gap between upper- and lower-income countries. Interviews with the BABEL collaborators showed that 94% reported no patient information sheets in their country; 59% from the upper-income countries said these sheets were available compared with just 18% in lower-middle-income countries.
Among those taking part, 88% said they felt providing information sheets would have a “significant positive impact” on their patients’ treatment experience.
“The broad need for patient informational material can also be inferred by the high participation rate—on a voluntary basis—for this initiative, especially from some countries in Southeast Asia where the incidence of biliary cancers is particularly high,” the authors said.
Casolino R, Braconi C. BABEL working group of the COST Action 18122 (EURO-CHOLANGIO-NET), part of the European Network for the Study of Cholangocarcinoma. Bridging the equity gap in patient education: the biliary tract cancer BABEL project. Lancet Oncol. 2022;23(5):568-570. doi:10.1016/S1470-2045(22)00143-7