Purpose Taste and smell alterations (TSAs) in patients with lung cancer are poorly understood. This study investigates characteristics of TSAs when most severe, reported by patients after starting treatment for lung cancer. Methods Data was collected regarding TSAs, symptoms, food intake and nutritional status through structured interviews using the Taste and Smell Survey, the Patient-Generated Subjective Global Assessment and 3-day food diaries. This data derives from a longitudinal project and the interview with each patient when TSAs were most severe was purposefully selected for analysis. Results Sixty-one of the 89 patients reported TSAs, and the TSAs group were on average younger and more frequently smokers. Thirty-one patients reported symptoms impacting negatively on food intake, with 87 % in the TSAs group and 13 % in the no-TSAs group. Most commonly reported were loss of appetite, nausea and early satiety. Gender differences were seen with more women reporting stronger sensation(s) and more men reporting weaker sensation(s) and other changes. TSAs were described as affecting enjoyment of food and eating. A trend was seen where energy intakes declined with increasing TSAs. Energy intakes in the total study population were below recommended. Conclusion TSAs varied in characteristics and interacted with other symptoms. Gender differences may highlight a need to investigate approaches for identification and management of TSAs in men and women. Patients reported TSAs impacting on food enjoyment, and the hypothesis that patients with higher TSS scores have lower nutritional intakes should be followed up with a larger study in the lung cancer population.

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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.