Dutch translation and cultural adaptation of the LYMPH-Q, a new patient-reported outcome measure for breast cancer-related lymphedema

Two native Dutch speakers fluent in English (LvdB and MG) independently translated the LYMPH-Q items, instructions, and response options into Dutch. The translators were both medical doctors holding a research position at the Patient-Reported Outcomes, Value & Experience (PROVE) Center at Brigham and Women's Hospital and Harvard Medical School. Their independent translations were compared, and any inconsistencies were discussed and resolved. After consensus was reached, translations were merged into a single forward translation (v1) that was used in the back translation.

The Dutch version of the LYMPH-Q Upper Extremity Module (v1) was back translated by two residents from the Department of Plastic and Reconstructive Surgery of the Erasmus Medical Center (PvE and CK), who had not previously seen the original English version. Both back translators are native Dutch speakers who are fluent in English. Both back translations were compared to the original English version for conceptual equivalence by a member of the LYMPH-Q Upper Extremity Module development team. Discrepancies between the original English version and the back translation resulted in the re-translation of the candidate item, instruction, of response option, which was then back translated and re-checked for conceptual equivalence. Back translation resulted in v2 of the Dutch LYMPH-Q Upper Extremity Module for use in the cognitive debriefing interviews.

One-on-one cognitive debriefing interviews were conducted with patients recruited during an outpatient clinic visit within the Department of Plastic and Reconstructive Surgery at the Erasmus Medical Center in Rotterdam, the Netherlands. Eligible patients were aged ≥ 18 years, diagnosed with BCRL of the arm by a specialist, and native Dutch speakers. The goal of the interviews was to test whether patients understood the meaning of items, instructions and response options, the comprehensiveness of the content, and the cultural relevance of the Dutch translation of the LYMPH-Q Upper Extremity Module (v2).

Informed consent was obtained from all individual participants included in the study. The interviews were conducted by one researcher (LMB) and took place in a consulting room within the Plastic and Reconstructive Surgery outpatient clinic. The interviews were guided by a cognitive interview guide. Participants were asked to use the “think aloud” approach, i.e., to verbalize what they think each item, instruction, and response is asking. Any items, instructions, or response options that were difficult for participants to understand were explained by the researcher. Participants were then asked to provide an alternative word or phrase to enhance comprehension. Probing questions were also asked on the content and cultural relevance, and if there was any missing content. All interviews were audio recorded and transcribed verbatim. Difficulties or suggested changes by participants were documented on a Microsoft Excel worksheet and shared with the LYMPH-Q Upper Extremity Module development team member. Necessary changes from the cognitive debriefing interviews were incorporated into the Dutch version of the LYMPH-Q Upper Extremity Module (v3).

v3 of the Dutch LYMPH-Q Upper Extremity Module was proofread by two clinicians to correct any spelling or grammatical errors. This led to the development of the final Dutch version of the LYMPH-Q Upper Extremity Module.

Eight items were difficult to translate into Dutch. For example, the item “reaching across yourself” was translated differently by both translators: “het om u heen reiken” (English: reaching around you) and “kruisen/reiken over jezelf” (English: to cross/to reach over yourself). However, neither of these versions directly translated to be conceptually equivalent to the original English version. Discussion between the two forward translators resulted in the item being translated as “het maken van een overdwarse armbeweging om uzelf” (English: making a transverse arm movement around yourself). Another example is the item “depressed,” which was initially translated as “depressief,” but the meaning of this word in Dutch is “to suffer from depressive disorder.” Therefore, a more conceptually equivalent word was chosen (“somber” (English: sad, gloomy, somber)).

After comparing the back translation to the original English version, three items were found to differ in their meaning. First, the item “(how bothered are you by) people seeing your arm?” was back translated into “how other people think your arm looks.” Second, the item “(how bothered are you by) any difference between the size of your arms?” was back translated as “the difference between the size of your arms,” and third, the item “(how dissatisfied or satisfied were you with) your ability to enjoy life with the arm sleeve on?” was back translated into “the opportunity to enjoy while wearing your arm sleeve.” These three items were re-translated until conceptual equivalence was achieved.

Seven patients participated in the cognitive debriefing interviews. All participants were female, had a mean age of 61 years (range 43–71 years), and unilateral BCRL (n = 6). Clinical and demographic characteristics are shown in Table 2.

The cognitive debriefing interviews resulted in minor changes to the sentence structure and wording of three items. First, the item “(how bothered are you by) having to dress in a way to hide your arm?” was initially translated to “het met kleding op een bepaalde manier uw arm te verbergen” (English: using clothes in a certain way to hide your arm) but multiple participants struggled with the sentence structure and found the item not easy to read. The translation was then changed to “dat u zich op een bepaalde manier moet kleden om uw arm te verbergen” (English: to have to dress a certain way to hide your arm). Second, the item “(how dissatisfied or satisfied were you with) your ability to be physically active with the arm sleeve on?” was initially translated to “hoe lichamelijk actief u kon tijdens het dragen van de armkous” (English: how physically active you could while wearing the arm sleeve), which was grammatically incorrect and it was necessary to add a verb (“zijn,” English: to be). Third, the item “(how dissatisfied or satisfied were you with) how you looked when you were dressed and wore the arm sleeve?” was initially translated to “hoe u er uitzag in uw kleding en uw armkous droeg” (English: how you looked in your clothes and wearing your arm sleeve). To improve comprehensibility and readability, the translation was changed to “hoe u eruit zag in uw kleding terwijl u uw armkous droeg” (English: how you looked in your clothes while wearing your arm sleeve).

Overall, patients found the scales to be easy to understand, comprehensive, and culturally relevant. They felt that the items touched upon important concepts that are often overlooked during consultation with their care providers. Examples of the changes made throughout the translation process are provided in Table 3.

Proofreading resulted in minor changes to punctuation, typography, and grammar. These changes improved the readability of the items, instructions, and response options, resulting in the equivalent Dutch translation of the LYMPH-Q Upper Extremity Module.