Klaske van Sluis

104 6.4. Discussion 6.4 Discussion This study presents a large sample of total laryngectomized respondents from multiple countries, examining both a large range of participation and func- tional issues and r-QoL. The study data is unique and relevant, nevertheless the study lacks validated measures as well as respondents’ information regard- ing, for example, marital status and type of voice rehabilitation. In order to reduce this limitation of the use on a non-validated questionnaire, the method of semantic clustering of questions was used, comparable to validated quality of life questionnaires (e.g. EORTC-C30) [22–24]. Clustering of both questions in r-QoL seems feasible, since it is known that independence is an attribute of the concept quality of life [23, 24]. The demographic characteristics of the respondents (the distribution of age, sex, educational level and time since laryngectomy) were comparable to other studies and correspond to the characterization of “the average total laryngec- tomized person” as a middle-aged man (around 65 years old, male-to-female ratio of ∼ 6:1) [13, 25–29]. Outcomes of the rating scales regarding overall health and independence both had an average rating of 7.2(on a scale 0-10). These two ratings are both notably high, since a TL procedure is usually associated with a lower QoL rating and depressive symptoms [13, 30]. However, retrospective study set-ups like this questionnaire tend to have a larger inclusion of nonproblematic patients than prospective studies, and thus, more positive results (e.g. a more positive r-QoL rating) [30]. However, the distribution of the independence rating is disconcerting: for example, 25% of respondents rate their independence a score of 5 or lower, which can be interpreted as being unable to participate in many daily activities. Our study shows that respondents who were < 2 years since TL, and respon- dents < 60 years old in general report a lower r-QoL rating. For almost all the issue themes, sex, age and time since laryngectomy have a significant influence on (the number of) experienced participation and functional issues. Therefore, younger respondents ( < 60yrs), especially women, and those who have had the TL procedure less than two years ago, seem to be uniquely disadvantaged in terms of r-QoL ratings and reported participation and functional issues. The influence of age, sex and time since TL procedure have also been un- derlined by other studies. Age as an influencing factor on r-QoL is supported by multiple studies reporting that indeed younger total laryngectomized pa- tients experience a higher psychological distress, impacting their coping, since younger patients may have a better preoperative baseline functional status and activity level [4, 31, 32]. Time since laryngectomy as an influencing factor on reported issues has been supported by multiple papers: on average the reported problems decrease over time [5, 33]. The fact that after the first 2 years after the TL procedure the r-QoL improves, shows that rehabilitation and coping can be effective, but takes several years. Earlier studies have shown that gender