Education, counseling, support groups, and provider knowledge of total laryngectomy: The patient's perspective

Studies over a 40 year period have reported inadequate education and counseling for persons with laryngectomy; however, several long-term trends, including centralization of laryngectomy surgeries in major teaching hospitals, the rise of the internet, and the increased use of the tracheoesophageal prosthesis (TEP) for voice all have the potential to improve this situation. This study investigated if persons with total laryngectomy reported receiving adequate education and counseling before and after their laryngectomy, and how this varied by gender, geographic setting, communication method, and time. It also examined who participated in in-person and online support groups, and what health care providers and settings are perceived as most knowledgeable about laryngectomy.

This research was a cross-sectional study, with 200 participants meeting the inclusion criteria. Results were analyzed via descriptive statistics, Pearson chi-square test, McNemar's test, Fisher's exact test, and one-way ANOVA with post-hoc analysis.

About half of persons with total laryngectomy reported receiving adequate education and counseling pre- and post-surgery, with men being more likely to report adequate education than women, and persons using a TEP for voice more likely to report adequate education than persons using alternate communication methods. Most participants (71%) participated in support groups, with women more likely to participate than men. Participants in rural areas were less likely to participate in in-person support groups than those from suburban or urban areas. Participants using a TEP as a communication method were more likely to participate in in-person support groups than those using other communication methods. Doctors, speech-language pathologists (SLPs), the internet, and support groups were highly rated sources of information. Among health-care providers, ENTs and SLPs were rated as the most knowledgeable, and primary-care physicians, dentists, and emergency medical technicians the least.

There continues to be a need for adequate education and counseling both before and after surgery. This education and counseling may need to continue for months or years post-surgery, due to the traumatic nature of the laryngectomy procedure. Doctors and SLPs can play a leading part in providing education and counseling, and with other health professions and in-person and online support groups also having a role to play. Frontline health care providers are perceived as having low knowledge of laryngectomy.