Objective: The objectives of this study are to present the method and the challenges of the translation of the Parkinson´s Disease Sleep Scale (PDSS-2) (originally developed and validated in British English and German) into 31 languages (representing four language families), and which is now widely used in various countries.

Background: Nocturnal sleep problems in Parkinson’s disease (PD) may occur in up to 96% of affected individuals. The PDSS-2 was developed to assess these nocturnal disturbances. It is a patient self-rating scale comprising 15 items, evaluated on a 5-point frequency scale [from Very Often (0) to Never (4)], with a total score ranging from 0 to 60, where higher scores indicate greater impairment. The PDSS-2 covers three domains: motor symptoms at night, PD specific symptoms at night and disturbed sleep.

Methods: In each country, the standard translation process consisted of several steps: 1) Conceptual analysis of the original PDSS-2 with its developers; 2) Forward/backward translation step; and 3) Test on five PD patients through interviews. The adjusted process was used for countries using a national variant of the same language (e.g., the British English version was adapted for use in the USA and Australia).

Results: The translation process did not reveal any cultural issues since most of the concepts assessed in the PDSS-2 are cross-culturally relevant. Most of the difficulties belonged to the semantic, pragmatics and syntactic fields. For instance, the word “night” in item 2 (Did you have difficulty falling asleep each night?) could not be literally translated in eight languages. For contextual and colloquial reasons, the word “evening” was more appropriate in Czech, Danish, French (Belgium, Canada, France), Italian, Latvian, and Slovak. The distinction between “sometimes” and “occasionally” in the frequency scale created queries, solved in collaboration with the developers. Item 13 (On waking, did you experience tremor?) raised syntactic issues, i.e., in some languages the order of the sentence segments was reversed (Did you experience tremor on waking?). Other examples are presented.

Conclusions: The multi-step and rigorous translation methodology was key in developing 31 translations of the PDSS-2 conceptually equivalent to the British English original.

References: Trenkwalder C, Kohnen R, Högl B, Metta V, Sixel-Döring F, Frauscher B,Hülsmann J, Martinez-Martin P, Chaudhuri KR. Parkinson’s disease sleepscale–validation of the revised version PDSS-2. Mov Disord. 2011Mar;26(4):644-52.

Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A et al; ISPOR Task Force for Translation and Cultural Adaptation. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health. 2005;8(2):94-104.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/translating-the-parkinsons-disease-sleep-scale-pdss-2-into-31-languages-using-a-standardized-methodology/