How do you say “a big job” in Finnish, Portuguese and Dutch? For a global project like Enroll-HD, making sure everything is accurately translated is essential. Anything that someone joining the study reads, like a questionnaire or the consent form, and many of the documents that the clinic staff read while working with a participant must be translated. They must mean exactly the same thing in each of the 14 languages of the study.
Getting the words just right requires close collaboration between language experts in many nations. “It needs to be easily accessible for the patients, so they don’t have to do any translation in their head,” says Cardiff University’s Ruth Fullam, who coordinates translation efforts as the European Enroll-HD manager. If people in Sweden answer questions differently to people in Brazil because the words aren’t quite right, that makes the study less accurate.
The documents for Enroll-HD are written in English and go through an elaborate process of translation and checking. The process adopted for Enroll-HD is based on a method set up by the International Society for Pharmacoeconomics and Outcomes Research, a global group that promotes research to improve health.
Each of the documents first gets translated twice by two separate translators. Those two versions are compared, and the translators hammer out any disagreements and merge the two into one document. This version is then translated back into English and compared with the original, to check for errors. If there are any big differences, these must be negotiated again. For each language, about 100 pages worth of material goes through this process. “The translations take a long time and involve a lot of people,” says Fullam. “They’re an awful lot of work.”
Perhaps one of the most important documents to translate accurately is the Problem Behaviors Assessment, an interview that is designed to detect behavioral issues that people with HD sometimes have, such as impulsive behavior, aggression or apathy.
Words like these that describe emotional states can be especially difficult to translate and communicate to study participants. Perseveration, for example, is easily confused with compulsive behavior, even though the words have slightly different meanings: People who perseverate usually aren’t aware that they’re repeating the same thoughts or actions over and over again, whereas people with compulsive behaviors realize what they’re doing.
To find exactly the right words that the interviewer should say, sometimes the translators need to consult with native-language experts in psychiatry and Huntington’s disease. Even after that’s settled on, further word changes may be required for the documents used in different nations—for instance due to regional variations in Spanish and Portuguese.
Since English has a larger vocabulary than many other languages, it is not always possible to find exact counterparts for English words.
For example, part of the Caregiver Quality of Life questionnaire asks people whether they feel “a sense of anguish,” but there’s no exact equivalent for “anguish” in Germanic and Nordic languages such as Danish. “Anguish” means severe suffering and distress, and after much discussion, the translators settled on the Danish word “forpint,” which gets across that feeling of acute pain. The idea of “grief” (part of the same questionnaire) is also difficult to translate, as some languages don’t have a word to indicate the particular type of sadness that is felt after a loss.
This story was originally published in the Autumn 2014 issue of Enroll!