Klaske van Sluis

General discussion 157 concern. Although efforts have been made to reduce pulmonary complaints over the past decades, they are still present. The survey study (chapter 6) showed the high correlation of pulmonary issues with other experienced prob- lems. It seems that presence of pulmonary issues influences participation in (social) activities. Providing EMST, proved to be safe and feasible in total la- ryngectomy patients. It is recommended to further investigate the effectiveness of this training program in a large group of participants who explicitly report pulmonary problems. 9.4 Clinical recommendations 9.4.1 Pre-treatment counselling and tailored rehabilita- tion We recommend to provide tailored rehabilitation programs for this group of patients from the initial preoperative period to the postoperative period and through the rehabilitative period. Pre-operative counselling is needed to inform patients who are admitted to total laryngectomy about the procedure and the consequences of the procedure. The process by which the patient is admitted and is informed by healthcare professionals is leading towards more shared decision-making, which refers to the process in which patients and healthcare professionals make health-related choices together. Therefore, it is important to explore patients’ priorities, values and concerns about the treatment and the outcome, as well as possible benefits, risks and implications of the treatment options. The SLP should offer pre-operative counselling on the available speech rehabilitation methods and (communicative) functioning after total laryngec- tomy. Creating realistic expectations about the rehabilitation trajectory and functional outcomes is important to help patients cope with their condition after surgery. Within this rehabilitation program the focus should be on patient-centered care, in which the provided support is adapted to the needs of the total la- ryngectomy patient and their loved ones [15–17]. It is important to involve the partner of the laryngectomee, since a shift in give-and-take balance of the spousal relationship can be expected. Clinicians should create openness in dis- cussing the impact of the surgery on the relationship. Ultimately, a high level of patient activation is stimulated. Patient activation is defined as patients’ knowledge, confidence, and ability to manage the disease and manage their life again [15, 18, 19]. The SLP should be involved in the rehabilitation trajectory from pre- operative counselling up to long-term functioning, since most patients need ongoing management of their communication issues. During the data collection for the prospective study, the SLP’s stated that the structured study assess- ments provided them an opportunity to re-evaluate the rehabilitation process. During this consultation they preferred to discuss overall well-being as well as