Cultural adaptation of EORTC cancer QOL instruments in Puerto Rico

Objective: The purpose of this qualitative study was to culturally adapt two European Organization for Research and Treatment of Cancer (EORTC) quality of life (QOL) instruments (general QLQ-C30 and head and neck QLQ-H&N35) for use with cancer patients in Puerto Rico.

Methods: Standard forward-backward translation procedures supplemented with a pre-pilot administration to five lay subjects produced a preliminary Puerto Rican-Spanish version of the QLQ-C30 and QLQ-H&N35. Then, the two structured, self-administered QOL instruments were completed by 17 subjects from the target populations (a mix of healthy, pre-treatment and in-treatment for head and neck cancer) for the pilot testing of the translated questionnaires. A qualitative analytical interview was conducted with each subject following each questionnaire administration to assess the language of each question for difficulty, confusion, difficult wording and/or upsetting language to the subject.

Results: Overall the QOL instruments were well accepted in the Puerto Rican sample and the participation rate was 89%. A total of five questions (17%) of the QLQ-C30 and one question (3%) of the QLQ-H&N35 were identified as requiring significant language modification in the pre-pilot administration phase on 5 subjects. In the pilot test phase on 17 subjects, one (6%) of the 17 subjects had a minor problem understanding one question (1/65 of the two instruments combined) of the QLQ-H&N35 preliminary Puerto Rican Spanish version.

Conclusions: This qualitative study found that even slight language differences have a significant effect in the understanding of QOL instruments. Following the standard forward-backward translation phase, 17% of the questions of one instrument were identified as difficult to understand or had confusing wording for the Puerto Rican version, even though the instruments were translated from a linguistically similar instrument (American-Spanish). The introduction of a small pre-pilot phase (n = 5) proved highly efficient in identifying the majority of the language difficulties.

Supported by NIH NRSA T32 DE 007255