Quality of life assessment in laryngectomized individuals: do we need additions to standard questionnaires in specific clinical research projects?

Contains fulltext : 47975.pdf (publisher's version ) (Closed access)OBJECTIVES: To assess, whether the EORTC questionnaires QLQ-C30 and QLQ-H&N35 give enough detailed information to study specific quality of life (QoL) related issues in laryngectomized individuals. DESIGN: Multicentre, prospective clinical trial; baseline measurement with EORTC questionnaires and an additional questionnaire, focusing on specific postlaryngectomy problems. SETTING: Head and Neck Department of one Comprehensive Cancer Center and three Academic Medical Hospitals in the Netherlands. PARTICIPANTS: Eighty laryngectomized individuals, selected to participate in a prospective clinical trial on hands-free tracheoesophageal speech. MAIN OUTCOMES MEASURES: Comparison of QoL dimensions, as assessed with the standard EORTC questionnaires, with the information obtained with additional questions, aimed at discovering in more detail, e.g. voice and respiratory problems in laryngectomized individuals. RESULTS: Based on the EORTC QoL questionnaires a good overall and voice specific QoL-level was found. However, the additional questionnaire showed that especially concerning voice and respiration more specific information was obtained. For example, despite an overall satisfaction with many aspects of the voice in more than three-quarters of the patients, speaking in a noisy environment was reported by 63% of the patients as being a serious problem, and a significant relation could be established between pulmonary and voicing problems (r = 0.28, P < 0.05), something also undetectable with the EORTC questionnaires. CONCLUSIONS: These findings underline the necessity to develop and use more specific additional questionnaires as an adjunct to the existing EORTC questionnaires, when studying specific symptoms in laryngectomized individuals, especially in order to detect intervention related changes over time