VoicePoints [ ? 2005 Dr. Jeff Searl ]      coordinated by  Dr. Jeff Searl, Associate Professor ( jsearl@kumc.edu )                                Hearing and Speech Department, The University of Kansas Medical Center                                MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160

Quality of Life and Voice after Total Laryngectomy
By Tanya L. Eadie, Ph.D., CCC-SLP

Author?s note: I would like to begin by thanking many members of WebWhispers who have participated in some of my studies in the past few years. You may in particular remember having me record your voice, and asking you to fill out some questionnaires at the IAL meeting in Vancouver, B.C. After moving to Seattle to the University of Washington a year ago, I know that I have misplaced some of your e-mails. If there is anyone who would still like a copy of the results of the studies (see the following article for a summary), please send me an e-mail at: teadie@u.washington.edu or feel free to call me at (206) 616-2753. Thanks again for your generosity and for sharing your insights! Until we meet again!

Introduction

In the past few decades, there has been a change in how health care providers assess, treat, and measure outcomes for individuals who have been diagnosed with disease. For example, the focus of outcomes has gone beyond measuring survival or morbidity for surgical techniques. In the realm of speech-language pathology, the focus has shifted beyond the number of words or sounds correctly produced, the rate of speech, and the pitch or intensity of speech, to examining how well one communicates in a social context. In summary, there has been additional focus on how a particular treatment or disease impacts a person?s ?quality of life?.

Health-related quality of life (QOL) is a multidimensional construct that is unique to one person, and changes over time. Each person evaluates his or her quality of life with respect to many components such as physical, social, psychological, and even spiritual elements. Every individual places different ?weights? on these components, and the evaluation must be interpreted within specific functional contexts (i.e., current health status, limitations in performing biological functions such as eating, or in performing daily activities such as dressing, defined losses and needs, support systems available, etc.). One area where the multidimensional construct of QOL has been explored is found in the clinical literature on those who have been treated for head and neck cancer.

Many research studies have focused on QOL after treatment for laryngeal cancer. Results highlight the fact that although treatment of the cancer has improved (i.e., there are higher survival rates in the past few decades), there can be continued difficulty experienced by individuals as a consequence of their treatment, even many years after treatment of the disease has ended. Further, these effects may occur regardless of the type of treatment (i.e., radiation therapy, conservative or radical surgical treatment, chemotherapy, or a combined treatment protocol). Consequently, the purpose of this article is to summarize recent research outcomes found for individuals after total laryngectomy by considering changes in the physical, psychological, and social domains, and ultimately, how total laryngectomy can affect one?s QOL. Because loss of voice is one of the most obvious physical losses after total laryngectomy, the role of voice and communication will specifically be examined. Further, since outcomes after laryngectomy are subject to the influence of several personal factors, such as an individual?s gender, economic status, and family support, in addition to other factors such as time elapsed since surgery, outcomes will be placed in the context of these factors. 

Measuring physical, psychological, and social consequences after total laryngectomy

In order to measure QOL, researchers use a number of questionnaires or inventories that are either specialized to the head and neck cancer population, or are more general measures of health used in any population. Common scales include the University of Washington-QOL (UW-QOL) scale, the Functional Assessment of Cancer Therapy, Head and Neck (FACT-HN), the University of Michigan Head and Neck Quality of Life (HNQOL) instrument or the European Organization for the Research and Treatment of Cancer (EORTC) Quality of Life (QLQ-C30) questionnaire. These questionnaires often ask individuals to judge their abilities in speech (e.g., how well are you understood), swallowing and eating (e.g., ability to chew or swallow liquids or solids), pain effects (e.g., how many pain medications you take), emotional effects (e.g., how much you are embarrassed by your voice or stoma), or social consequences (e.g., if you have had to quit your job, or how much your condition has affected relationships with others).

Although these other physical consequences exist after total laryngectomy, many research studies have focused upon the consequences on voice and speech production. For example, studies have compared the 3 primary types of speech available after laryngectomy (e.g., esophageal, tracheoesophageal (TE), or artificial laryngeal speech) by examining the ?voice? quality, the ability to be understood, self-reported communication performance, as well as their relationships with QOL. First, many studies have compared voice quality, understandability, speaking rate, etc. among users of alaryngeal speech. In general, results suggest that listeners prefer TE speech most, but that individuals using any 1 of 3 options can be extremely successful. Second, only moderate relationships have been found between intelligibility and QOL, and different aspects of voice quality and QOL. These results suggest that it is more than just the sound of the voice, or the ?intelligibility? of the speech that play a role in how one judges QOL. For example, while listeners may penalize women TE speakers more than men when they judge their voice quality, there are no differences in overall QOL reported by these same speakers. Finally, when one compares QOL reported by individuals using the 3 speaking options, results have either suggested no differences or perhaps slight advantages of TE speakers. In fact, some researchers have found no differences in reported QOL between TE speakers and individuals treated by radiotherapy and who retained a laryngeal system for speech.

While total laryngectomy obviously affects speech production, individuals do not often judge it as their most important concern after surgery. In fact, it is often the presence of the tracheostoma or the effects on social relationships that individuals report as being most important to their well-being.

Individuals must also learn to cope with the psychological consequences after total laryngectomy. For example, initially, one must cope with the diagnosis of a life-threatening disease and its treatment. Then, one must cope with the after-effects of the treatment, including how communication and altered breathing may affect the ability to return to work, functional activities, and social relationships. In a landmark study supported by Veteran?s Affairs, Terrell and colleagues investigated the long-term QOL in surviving patients with advanced laryngeal cancer. Patients were randomized to either a radiotherapy treatment (RT) plus chemotherapy (CT) group or a radiotherapy (RT) and total laryngectomy group. Ten years post-treatment, Terrell et al. found that individuals who had preserved larynges (RT + CT) had significantly better mental health QOL scores on a general health survey, as well as better pain scores than did those in the total laryngectomy group. More individuals who had undergone laryngectomy were depressed (28%) than those individuals with intact larynges (15%). However, when examining speech and communication scores, there were no differences between the two treatment groups.

These results suggest that although individuals who had undergone total laryngectomy appeared to have adapted to communication differences 10 years after treatment, that some individuals still reported pain and psychological consequences. In a replication of the study by Terrell et al., Eadie and Doyle compared self-reported QOL by 30 individuals who used TE speech. They found high levels of QOL in the domains of communication, eating, pain, and emotion that were better than the average results found for participants in the study by Terrell et al.

Why were outcomes different in these 2 studies? Eadie and Doyle suggested several possible reasons for the generally high self-reported QOL for their participants. First, participants in the study by Eadie and Doyle included only TE speakers, whereas the study by Terrell et al. included all types of alaryngeal speakers, including some non-vocal communicators. Including only TE speakers could have positively influenced the results for the participants in the study by Eadie and Doyle because TE speakers are usually judged as being most intelligible and ?pleasant? when compared with other alaryngeal methods. However, probably the most telling contrast between these studies was that participants in the study by Eadie and Doyle reported high levels of psychological function. Since increased depression is a significant predictor of reduced QOL, this could have affected results. Further, previous studies have indicated that good coping and adjustment skills are positive predictors of successful outcomes post-laryngectomy.

What else could have affected psychological function in the participants in the study by Eadie and Doyle? While voice quality varied greatly among these participants and only moderately correlated with QOL, participants also reported high levels of education, and membership in the International Association of Laryngectomees (IAL). In fact, involvement in support groups (e.g., IAL, WebWhispers) has been reported to be associated with higher levels of QOL, when compared to individuals who are not members.  However, caution must be used when interpreting these results, in that it CANNOT be said that it was BECAUSE of membership in this group that CAUSED better outcomes, but only that people who were members of a group like this, and who volunteered to participate in this kind of study, seemed to be the ones who were doing particularly well. For example, it may be that only those individuals who are feeling particularly healthy and who are able to travel, etc., are members in this kind of support group, which would positively bias the sample.

Obviously, there are differences among individuals, people of different cultures, and even between men and women. For example, some studies report higher levels of depression in women than men associated with disfigurement; however, social support buffers the impact on well-being for women. Women also indicate differential means of support than men. One study by Graham and Palmer indicated that women who are laryngectomized rely on family, reading, church services and non-laryngectomized social groups as primary support systems, while men reported benefit from laryngectomy group meetings, their work setting, and reading.  Therefore, levels of coping, and adjustment need to be investigated further with these issues in mind.

QOL as a dynamic process

 Several studies have indicated that the importance of particular domains of QOL may change over time as individuals adjust to the experience of having and surviving cancer. For example, after treatment for cancer an individual may no longer put as much emphasis on physical accomplishments but rather may find satisfaction in strengthening relationships with family. This explanation may be the basis for the results relating to continued dysfunction in speech, diet, and eating, at 6 months after total laryngectomy, and improved but continued, dysfunction at 2 years, compared with individuals treated with radiation therapy; whereas, there are no changes in communication-related QOL pre- and post-surgery at 10 years. However, individuals may continue to report underlying difficulties with pain management and depression at 10 years.

Clearly, methods of coping, adjustment, and social support (friends, family, support groups) help to offset these difficulties in some individuals. Thus, it would be of benefit to rehabilitation providers to identify what factors make some individuals more vulnerable than others, and to continue to promote social involvement, methods of adapting, and coping strategies to those individuals who need it. Since communication is the method by which we develop relationships, and frequent communicators report higher levels of QOL than those who communicate less, it is obvious that communication also needs to be optimized so as to promote a successful outcome. And as a speech-language pathologist, and former IAL voice institute participant, that?s a good thing to know!

IDENTITY THEFT

Identity Theft involves acquiring key pieces of someone's identifying information, such as name, address, date of birth, social security number and information enabling the identity thief to commit numerous forms of fraud which include, but are not limited to, taking over the victim's financial accounts, opening new bank accounts, purchasing automobiles, applying for loans, credit cards and social security benefits, renting apartments and establishing services with utility and phone companies.

Steps which may assist with maintaining your personal information are:

Reporting Identity Theft

            Call 911 to make a police report.  The sooner information is documented and entered into crime computers the easier it may be to adjust illegal financial transactions to your accounts.  Also, it provides law enforcement with possible identifiers and methods of operation to develop a suspect.  Police departments can share this information and hopefully make an arrest.

            If you have purchased something over the Internet, haven't received it and feel that you are a victim of a theft and not just a business dispute, you must report this to the agency in which the suspect resides.  You may also file a report to the Internet Fraud Complaint Center at:  http://www.ifccfbi.gov.  The IFCC is a clearinghouse for such crimes as fraud, computer intrusion/takeover and other crimes involving the use of a computer.  Upon receipt of the complaint they will forward a copy to the appropriate jurisdiction for review.

            Consult your local and state governments regarding specific laws in your jurisdiction as they apply to Identity Theft and Internet Fraud.

Informational Web Sites

Federal Trade Commission
http://www.ftc.gov

Privacy Rights Clearing House
http://www.privacyrights.org

U.S. Government Account Office
http://www.gao.gov

U.S. Postal Inspection Service
http://www.usps.gov/postalinspectors

International Association of Financial
Crimes Investigators
http://www.iafci.org  (go to links section)