The patient experience with treatment and self-management (PETS) questionnaire: Translation and cultural adaption of the Norwegian version

Abstract

Background: Noncommunicable diseases represents long term medical conditions, which often puts the patients under enormous demands when following treatment, exposing them to experiencing treatment burden. The Patient Experience with Treatment and Self-Management (PETS) questionnaire was developed as a patient-reported measure to identify treatment burden of chronic illness, using modern measurement theory and tested in a variety of settings. Developed in English, this set of measures had not been previously translated into Norwegian. The objective of this study was to develop a Norwegian version of the PETS and to pretest the translated measures through a cognitive debriefing methodology. Methods: A rigorous translation approach was applied, guided by Functional Assessment of Chronic Illness Therapy methodology. Bilingual teams from Norway and the United States reviewed the translation to develop a provisional version, which was evaluated for test content validity with cognitive interviews by probing 12 native Norwegian patients with noncommunicable diseases. The interviews applied both concurrent and retrospective verbal probing techniques, guided by a question route. Audio-recorded interviews were transcribed verbatim and analysed using systematic text condensation. Results: Assessment of translatability identified the need for cultural adaptation on several core words, balanced with the need to keep close to the original literal meaning. Seven patients with colorectal cancer and five patients with heart failure participated in cognitive testing of the Norwegian version of the PETS. The analytical process of the cognitive interviews identified two emergent main themes, 'comprehension and readability' and 'relevance of the PETS', with seven corresponding subthemes. Most items, response options and instructions were well understood by the patients. Revisions were made concerning cultural relevance. Conclusions: PETS items were semantically equivalent to the original. The patients with colorectal cancer and heart failure were able to comprehend the PETS and found it to express their experience with treatment burden in chronic illness. Future work will focus on psychometric construct validation and reliability testing of the PETS.