Reflections on the process of translation and cultural adaptation of an instrument to investigate taste and smell changes in adults with cancer

Taste and smell changes are common and distressing symptoms in patients with cancer, which may contribute to decreased nutritional intake leading to malnutrition and reduced quality of life. Evidence-based knowledge available to healthcare staff regarding dietary counselling of patients with taste and smell changes is lacking. To be able to develop advice to patients, these symptoms need to be characterised and assessed. The Taste and Smell Survey (TSS) is a 16-item questionnaire in English, which has been used in Canada to investigate self-perceived changes in taste and smell reported by patients with cancer. As no equivalent instrument exists in Swedish, we therefore translated the TSS. This article describes and discusses experiences of using a 5-step process for translation and cultural adaptation of the TSS. Each of the five steps was found to elicit different, essential information contributing to the enhancement of the translation and building further upon refinements of the previous steps. Using a structured, multistep approach to translation and cultural adaptation, we have produced a robust instrument to investigate taste and smell changes specifically adapted for use in the Swedish language and culture.