Language as a potential barrier to participation in cancer clinical trials

Background: Racial/ethnic minorities disproportionately suffer from a high cancer disease burden. Medical research provides evolving knowledge about cancer treatment; consequently, cancer clinical trials (CCTs) offer state-of-the art treatment for many with limited options. Racial/ethnic minorities are underrepresented in research and English proficiency may be one of many reasons. Study objective: To investigate the availability of language services to non-English speaking potential participants of cancer clinical trials in the state of New Jersey. Study Design/Methods: A self-administered questionnaire was distributed to research administrators of all New Jersey institutions offering cancer clinical trials during the study period. Results: The response rate was 67.5%. Spanish was the only non-English language in which trial documents were readily available. Two-thirds of institutions (66.7%) reported they had the ability to make trial documents available in a participant's language as needed. Only 42.9% of the institutions had trial documents readily available in Spanish. Of these, 89% also had language interpreters available during the informed consent process, and 77.8% had language interpreters available for the duration of participation in a trial. The most frequently cited reason for not providing language services was a lack of demonstrable need. Conclusions: Cancer research programs in New Jersey may not be adequately prepared to facilitate the accrual of non-English speaking persons into cancer clinical trials. This may lead to the unintentional exclusion of these groups from cancer clinical trials. More studies are needed to elucidate the import of language as a barrier to participation in cancer clinical trials.