PurposeLittle attention has been given to understanding the experiences and perceptions of tracheostomized patients. This study aimed to measure the impact of tracheostomy on well-being in critically ill patients with the development of the Tracheostomy Well-Being Score (TWBS).MethodsThis is a prospective, monocentric, observational study including critically ill patients with a tracheostomy without delirium. A 25-item questionnaire with items from six categories (respiration, coughing, pain, speaking, swallowing, and comfort) was used to select the 12 best items (two per category) to form the TWBS score after testing on two consecutive days. Item selection secured (1) that there were no skewed response distributions, (2) high stability from day 1 to day 2, and (3) high prototypicality for the category in terms of item-total correlation.ResultsA total of 63 patients with a mean age of 56 years were included. The 12 items of the TWBS were characterized by a high retest reliability (τ= 0.67–0.93) and acceptable internal consistency. The overlap with the clinician rating was low, suggesting that acquiring self-report data is strongly warranted.ConclusionWith the TWBS, an instrument is available for the assessment of the subjective effects a tracheostomy has on in critically ill patients. The score potentially offers a chance to increase well-being of these patients. Additionally, this score could also increase their quality of life by improving tracheostomy and weaning management.Clinical Trial RegistrationGerman Clinical Trials Register Identifier DRKS00022073 (2020/06/02).Supplementary InformationThe online version contains supplementary material available at 10.1007/s00068-022-02120-9.