Widening cancer patient experience assessment in Europe: Translation and adaptation of the Swiss Cancer Patient Experiences Questionnaire into European Spanish, Greek, Polish & Slovene

Introduction: Patient experience is an essential component of healthcare quality and fundamental for the delivery of person- and family-centered care. However, cross-cultural cancer-specific patient reported experience measures (PREMs) are scarce. Within the context of LIVERATION, a European pragmatic clinical trial evaluating the effectiveness of a cancer liver surgery, we aim to translate and culturally adapt the Swiss Cancer Patient Experiences (SCAPE) questionnaire (version 2023) into European Spanish, Greek, Polish and Slovene. The SCAPE questionnaire (Arditi et al., 2022; https://www.scape-enquete.ch/), originally adapted from the 2016 version of the NHS Cancer Patient Experience Survey developed in the United Kingdom (NHS England, 2023; https://www.ncpes.co.uk/), evaluates patient’s experience with cancer care throughout the care pathway and has been previously translated and adapted into Swiss Italian, Swiss French, Swiss German, and English. Methods: The English version of the SCAPE questionnaire was first reviewed and adapted for the LIVERATION project. Subsequently, a forward-backward translation and adaptation consisting of a multi-step, dynamic, and centralized review process was undertaken. The main steps consisted of 1) Independent forward translations by two bilingual translators familiar with the health concepts used; 2) Synthesis of forward translations to produce one common consensus translation; 3) Independent backward translation by a naive bilingual translator familiar with the health concepts used; 4) Expert review involving researchers with expertise in patient experience, cancer, quality improvement, and language, the translators, and the developers of the SCAPE questionnaire to produce a prefinal version of the translated questionnaire; 5) Harmonization to ensure congruence across different languages/cultures; 6) Pre-testing on a small sample of the intended respondents, elaborating on what they think of each questionnaire item and their corresponding response in order to assess item equivalence and clarity; and 7) Preparation of the final version. Throughout the process, translators aimed to achieve conceptual, semantic, idiomatic, and experiential equivalence in each of the target languages and cultures. Results: The cancer patient experience questionnaire is currently being translated and culturally adapted into European Spanish, Greek, Polish and Slovene. Understandability, inaccuracies or ambiguities, and discrepancies are being reviewed by a central body and discussed throughout the process in an iterative manner, as needed. Translators included professional healthcare translators, healthcare researchers and healthcare professionals (i.e., physicians). Conclusion: This seven-step dynamic process is effectively guiding the cross-cultural translation and adaptation of the questionnaire. The final versions will be used during the LIVERATION clinical trial and will be made available to researchers and practitioners interested in evaluating cancer patients’ experiences to improve quality of care. Future work will focus on evaluating the psychometric properties of the instrument.