Klaske van Sluis

General discussion 153 which does evaluate the specific problems patients after total laryngectomy face in intelligibility, voice quality and daily communication. With the shift towards patient-centred care, it is essential to incorporate the patients’ view on the communicative outcome. Using PROMs has advan- tages; it is not time-consuming and can be used multiple times over time to detect changes during the rehabilitation process. It has to be noted that in our prospective study, we seemed to detect a response shift. A response shift refers to the shift in internal standards, values, and meaning of QoL. After surgery, some participants express they are happy to be alive and satisfied with their communicative abilities. This results in normal PROM scores, whilst they reported abnormal scores before surgery and the objective measures show a worsening of voice quality. The response shift can be explained by the ability of human beings to adapt to life events. In future research investigating this response shift, specifically for the head and neck cancer group, is valuable to define what speech-related QoL means for individuals before and after treat- ment. Further developments in generating condition-specific questionnaires and computer-adaptive testing can improve targeted monitoring of QoL outcomes. Perceptual instruments In the studies in this thesis we focus on a general score for perceptually rated voice quality and intelligibility. These parameters are derived from the IIN- FVo scale, where impression, intelligibility, noise, fluency and voicing are eval- uated [14]. The IINFVo scale has been developed to evaluate tracheoesophageal speech, which requires different aspects of evaluation. The scale includes spe- cific aspects which are interesting for tracheoesophageal speech, for example the unintended additive noise during speaking. For usability reasons, we chose to simplify the perceptual outcome to overall impression of voice quality and in- telligibility, in both chapter 3 and 5. We preferred the advantage of creating one outcome score for voice quality and one outcome score for intelligibility. Within these studies there were groups of up to ten SLP’s who rated the perceptual outcomes. Perceptual outcomes are subjective by nature, and outcomes are influenced by listeners’ understanding of the scales, and listeners’ expectations, and tired- ness in a long listening experiment. Chapter 5 shows that reported perceptual results are scattered between the expert raters (Figure 5.1). Perceptual rating are still considered as the gold standard by many researchers, but with the promising automatic acoustic evaluation tools as well as the upcoming role of PROMs this might be reconsidered for evaluating speech after total laryngec- tomy. Recommendations for multi-dimensional voice and speech analysis Ideally, outcomes in studies (prospectively) evaluating total laryngectomy speech have to be combined with meta-analyses. Chapter 2 showed that the included

RkJQdWJsaXNoZXIy ODAyMDc0