Klaske van Sluis

Interaction of functional and participation issues on quality of life 105 differences are present in reported issues after total laryngectomy. Women are inclined to experience more post-operative complaints, and issues with social interaction due to stigmatization [4, 31, 34]. The ‘pulmonary issues’ seem to have a strong correlation to most other themes. Therefore these pulmonary issues might be partially responsible for other reported issues [5]. Although reported less frequently, the issues from the two themes ‘avoiding social activities’ and ‘experienced limitations in daily ac- tivities’ are the main influencers of the variance in r-QoL. Thus, the ability to fulfill meaningful activities seems to have a greater impact on r-QoL than the purely physical consequences of TL in general. The inclusion of the indepen- dence rating in the r-QoL rating could have introduced a bias in the correlation analysis. The concept quality of life includes development and improvement of life (adapting to changed health condition and finding new meaning), indepen- dence, achievement of goals and aspirations, and autonomy [22–24]. The study design has its limitations. The response rate was 21%; the questionnaire was sent via email and was shortly available online. Non-response bias might be present and can cause a bias in how well the data represents the actual total laryngectomized population. Additionally, the respondents of this questionnaire were all clients of Atos Medical AB. The selection bias concerns patients most likely using voice prostheses and/or HMEs, education level and internet use overall and across countries, financial status, and insurance or reimbursement systems between countries [3]. It is likely that Atos Medical clients with a higher age or lower educational level were less well reached with this online questionnaire in certain countries. This could explain the differences in educa- tion level between countries as well as the relatively high education level in this questionnaire. 6.5 Conclusion Younger respondents ( < 60 years), especially women, and those who have had the TL procedure less than 2 years ago, seem to be uniquely disadvantaged in terms of r-QoL ratings and reported participation and functional issues. The experienced limitations in daily activities and avoiding social activities are associated with decrements in the respondents’ r-QoL rating. The r-QoL rating is mainly influenced by the ability to do meaningful activities, and less by purely physical consequences of TL. Most issue themes are interdependently correlated. The theme “pulmonary issues” seems to have a strong correlation with most other themes and is key in most other reported issues. Therefore, pulmonary issues might be an underlying cause of many other issues, including experienced limitations in daily activities and avoiding social activities. To improve clinical practice, it is recommended to adequately prepare and monitor patients regarding their participation in social activities, meaningful activities, and pulmonary issues to enhance their QoL.