The Development of a Tracheostomy-Specific Quality of Life Questionnaire

Abstract

Objective: A long-term tracheostomy can be a life-altering event and can have significant effects on patients’ quality of life (QOL). There is currently no instrument available to evaluate tracheostomy-specific QOL. To address this deficiency, the objective of this study was to create and preliminarily validate a pilot tracheostomy-specific QOL questionnaire to assess its feasibility. Methods: A multidisciplinary team developed the pilot tracheostomy-specific QOL questionnaire (TQOL) in 3 phases: item generation, item review, and scale construction. The survey was administered at 0 and 2 weeks to a pilot group of tracheostomy patients with concurrent administration of a validated general QOL questionnaire at week 0. Convergence validity, test-retest reliability, and internal consistency were the primary outcome measures. Results: A total of 37 patients completed the study (mean tracheostomy duration = 90 weeks). The convergence validity of the TQOL was moderately strong ( r = 0.72), and the test-retest reliability was strong ( r = 0.75). The TQOL also demonstrated good internal consistency (Cronbach’s alpha = 0.82). Conclusion: The TQOL has moderately strong internal consistency, convergence validity, and test-retest reliability. While additional refinement and validation may improve the questionnaire, these initial results are promising and support further development of this tool.