Klaske van Sluis

154 9.2. Functional issues and well-being after total laryngectomy - Section 2 number of total laryngectomy patients remains small and heterogeneity in of- fered speech rehabilitation is present. Prospectivally studying this group proved to be complex because of the change in outcomes over time, drop-out of par- ticipants, and the need for educated staff to continuously perform the research assessments. In order to generate consistency in evaluating speech outcomes within studies and over different study groups, it is helpful to create consensus in the multidimensional assessment tools that are used. Having a combined final score for perceptual outcome, (automated) acoustic scores and PROMs improves quality and comparability of the studies. The body of the studies incorporated in this thesis is not strong enough to provide definite recommen- dations towards the instruments which should be used, but with help of a dedicated expert panel consensus on multi-dimensional analysis of tracheoe- sophageal speech can be reached. 9.2 Functional issues and well-being after total laryngectomy - Section 2 The chapters incorporated in the second part of this thesis focus on functional issues and psychosocial functioning after total laryngectomy. With the removal of the larynx, speaking, breathing, swallowing and smell function is altered. The functional issues resulting from this are diverse and continually impact daily functioning. In the studies incorporated in the second section we use a variety of research methods, including a questionnaire, functional training, and qualitative research, to investigate the problems that total laryngectomized individuals face. 9.2.1 Summary of the findings The influence of functional issues on the reported quality of life In Chapter 6 we explored functional and participation issues and their inter- action with reported QoL after total laryngectomy. With a worldwide question- naire we assessed interactions between reported issues. Although the response rate was 21%, the total of 1705 respondents is uniquely high in this specific patient group. Respondents were situated in different countries, over several continents. As no validated questionnaires were used, we chose to restructure the questions in issue themes. An advanced analysis was performed to corre- late the issue themes to each other and the reported QoL. Interestingly, the issues from the two themes “avoiding social activities” and “experienced limi- tations in daily activities” are the main influencers of the variance in reported QoL. The ability to fulfil meaningful activities seems to have a greater impact on reported QoL than the purely physical consequences of total laryngectomy in general. Another interesting finding was the strong correlation which was