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Developing a New Self-Report Tool of Communicative Participation for Adults with Communication Disorders
This version has all references and the pdf file with the CPIB form following.
Developing a New Self-Report Tool of Communicative Participation for Adults with Communication Disorders
One of the greatest difficulties experienced by people who have had a total laryngectomy relates to changes in verbal communication. These changes may lead to withdrawal and social isolation, and may ultimately affect an individual’s quality of life (Fung et al., 2005).
After total laryngectomy, voice and speech rehabilitation is achieved through various means including electrolaryngeal speech, esophageal speech, and tracheoesophageal voice restoration. While some researchers might conclude that one alaryngeal method is superior over another (in terms of speech acoustics closest to typical speech etc.), there is a lot of variability among speakers who use alaryngeal speech modes. For example, while some individuals continue to struggle with their voice and speech, some studies have also shown that some speakers using alaryngeal speech methods may be as satisfied with voice function as some speakers with intact/healthy larynges (Schuster et al., 2004; Stewart et al., 1998). However, these conclusions may also be affected by how we define communication “success”. In other words, how we measure this outcome is important.
Traditional methods of assessing communication outcomes after total laryngectomy include use of speech intelligibility or voice quality measures performed by clinicians. Clinicians such as speech-language pathologists may provide a measure of the percentage of words they can understand (i.e., called speech intelligibility), or they might subjectively judge speech outcomes using rating scales (Finizia et al., 1999). These outcomes may be helpful for documenting changes before and after therapy, or they might help the clinician and patient identify common goals to focus on during therapy. In addition, it is becoming increasingly common practice within all medical settings for healthcare providers to ask patients about their own perceptions of health and function. This directive is supported by the National Institutes of Health in an initative called the Patient-Reported Outcome Measurement System (http://www.nihpromis.org).
Developing a self-report tool is not a simple process: we must follow careful steps to ensure that the tool is valid. If we want to measure something meaningful, we need to know that we are asking the right questions in the right way. This involves several critical phases of interviewing the “stakeholders”: people who are living with the condition. We also need to ensure that the tool is reliable (e.g., if you were to take the survey two times, would you get the same response?), and that it is valid (e.g., does it measure what we intend it to measure?). These properties are usually established with widespread testing in a large group of individuals and then by performing several statistical tests to ensure the items (and the entire tool) meet rigid criteria.
Self-report measures are commonly used with people who have undergone total laryngectomies, both in clinical and research settings. Some of the tools may be general (i.e., investigating overall health), whereas others have been designed to measure consequences of a specific disease (i.e., investigating the influence of specific head and neck cancer symptoms on well-being). In addition, there are discipline-specific questionnaires that measure characteristics of interest within a discipline, such as how voice function affects well-being.
Results using these tools are variable when we examine speech and voice outcomes after total laryngectomy. For example, Op de Coul et al. (2005) examined the sensitivity of two quality of life questionnaires for measuring voice-related problems in 80 laryngectomized individuals who used tracheoesophageal speech. They found good overall and voice specific-quality of life levels using the two questionnaires. These results are consistent with others who also report that while difficulties are evident right after surgery and treatment, many individuals report good overall quality of life one to two years post-laryngectomy (Hanna et al., 2004). However, Op de Coul et al. (2005) found that use of their 2 specific questionnaires masked some voice-related concerns, which were only revealed after asking their subjects additional questions. For example, despite an overall satisfaction with many aspects of voice (e.g., intelligibility, loudness, pitch, fluency), more than half of the subjects (63%) in their study reported serious problems with communicating in noisy environments. These results suggest that we may not be asking the right questions if we want to measure how well individuals are communicating in real life situations.
While some existing self-report tools appear to measure some aspect of speech or voice function, no tools are dedicated to measuring communication in everyday settings, or what we call “communicative participation” (Eadie et al., 2006). Communicative participation may be defined as taking part in life situations where knowledge, information, ideas or feeelings are exchanged. For example, communicative participation includes talking to strangers, ordering a meal in a restaurant, or discussing end-of-life care wishes with family members.
Due to this gap in research and clinical practice, our multidisciplinary research team at the University of Washington has begun to develop a new self-report tool called the Communicative Participation Item Bank (CPIB; Baylor et al., 2009; Baylor et al., 2013). The CPIB is intended to measure communicative participation in community-dwelling adults with a range of communication disorders. We developed this tool using the recommended procedures for patient-report measures by the National Institutes of Health. First, we defined what we wanted to measure – communicative participation. Items were then developed on the basis of a literature review (Eadie et al., 2006), as well as several studies in which we interviewed people with various types of communication disorders, including those who had undergone total laryngectomy (Baylor et al., 2011). The items in the CPIB ask participants to rate how much their “condition” (e.g., such as head and neck cancer, Parkinson’s Disease, or Multiple Sclerosis) interferes with participation in a wide variety of daily speech activities using a 4-point scale. For example, items in the CPIB include interference talking to people you do not know, making a telephone call to get information, ordering a meal in a restaurant, talking to groups of people, and having a conversation in a noisy place. There are 10 items in our paper and pencil form (Baylor et al., 2013).
Recently, we tested the reliability and validity of the questionnaire in a large group of individuals with various communication disorders (sample size = 701), including 197 patients who had been treated for head and neck cancer (Baylor et al., 2013). Results showed that the CPIB has strong reliability and validity (Baylor et al., 2013; Eadie et al., in press). It appears that the same items/questions may be relevant and sensitive for adults with different types of communication disorders (Baylor et al., 2013). Finally, we found that the new tool appears to measure something that standard quality of life tools used in head and neck cancer may not capture. These results are promising and suggest the value of adding this tool to complement existing outcome measures.
There are many future directions for our research with the CPIB. It was created using a modern measurement method (called Item Response Theory) that will eventually allow us to administer the questionnaire using computer adaptive testing. This means that only a subset of the items will need to be administered, which will reduce the time it takes to take the questionnaire. This is an important trait in busy health care settings, and is also critical for reducing the burden on patients. A second important line of research will soon be underway to determine whether the CPIB is sensitive to changes that occur in the time directly following head and neck cancer treatment. These results will help us measure and understand meaningful changes in communication that occur directly following a procedure such as total laryngectomy. We hope that the results may ultimately lead to the identification of better treatment methods for cancer survivors whose physical, social, and psychosocial well-being is impacted by the disease.
Author’s Note: Our team would sincerely like to thank all of you who have participated in past studies that have led to the development of this new tool. We are extremely grateful for all of your time and effort. There should be a new, large scale study underway in the next few months. Stay tuned for how you may be able to participate!
Tanya L. Eadie, Ph.D., CCC-SLP, is an Associate Professor in the Department of Speech and Hearing Sciences, and Adjunct Associate Professor in the Department of Otolaryngology-Head and Neck Surgery, Unviersity of Washington, Seattle, WA, USA. Her research and clinical interests focus on measuring communication outcomes in a number of clinical populations, including those who have undergone total laryngectomies. Her work has past and current research support by the National Institutes of Health. She is also a past faculty member for the International Association of Laryngectomees, Voice Institute.
Baylor, C., Burns, M., Eadie, T., Britton, D., & Yorkston, K. (2011). A qualitative study of interference with communicative participation across communication disorders in adults. American Journal of Speech-Language Pathology, 20, 269-287.
Baylor, C. R., Yorkston, K. M., Eadie, T. L., Kim, J., Chung, H., & Amtmann, D. (2013). The Communicative Participation Item Bank (CPIB): Item bank calibration and development of a disorder-generic short form. Journal of Speech, Language, and Hearing Research, 56, 1190-1208.
Baylor, C. R., Yorkston, K., M., Eadie, T. L., Miller, R. M., & Amtmann, D. (2009). Developing the communicative participation item bank: Rasch analysis results from a spasmodic dysphonia sample. Journal of Speech, Language, and Hearing Research, 52, 1302-1320.
Eadie, T. L., Lamvik, K., Baylor, C. R., Yorkston, K. M., Kim, J., & Amtmann, D. (in press). Communicative participation and quality of life in head and neck cancer. Annals of Otology, Rhinology & Laryngology.
Eadie, T. L., Yorkston, K. M., Klasner, E. R., Dudgeon, B. J., Deitz, J. C., Baylor, C. R., Miller, R. M., & Amtmann, D. (2006). Measuring communicative participation: A review of self-report instruments in speech-language pathology. American Journal of Speech-Language Pathology, 15, 307-320
Finizia, C., Dotevall, H., Lundstrom, E., & Lindstrom, J. (1999). Acoustic and perceptual evaluation of voice and speech quality: a study of patients with laryngeal cancer treated with laryngectomy vs irradiation. Archives of Otolaryngology-Head & Neck Surgery, 125(2), 157-163.
Fung, K., Lyden, T. H., Lee, J., Urba, S. G., Worden, F., Eisbruch, A., …& Wolf, G.T. (2005). Voice and swallowing outcomes of an organ-preservation trial for advanced laryngeal cancer. International Journal of Radiation Oncology Biology Physics, 63(5), 1395-1399.
Hanna, E., Sherman, A., Cash, D., Adams, D., Vural, E., Fan, C. Y., & Suen, J. Y. (2004). Quality of life for patients following total laryngectomy vs chemoradiation for laryngeal preservation. Archives of Otolaryngology-Head & Neck Surgery, 130(7), 875-879.
Op de Coul B. M., Ackerstaff, A. H., van As, C. J. , van den Hoogen, F. J., Meeuwis C. A., Manni, J. J., & Hilgers, F. J. (2005). Quality of life assessment in laryngectomized individuals: do we need additions to standard questionnaires in specific clinical research projects? Clinical Otolaryngology, 30(2), 169-175.
Schuster, M., Lohscheller, J., Hoppe, U., Kummer, P., Eysholdt, U., & Rosanowski, F. (2004). Voice handicap of laryngectomees with tracheoesophageal speech. Folia Phoniatrica et Logopaedica, 56(1), 62-67.
Stewart, M. G., Chen, A. Y., & Stach, C . B. (1998). Outcomes analysis of voice and quality of life in patients with laryngeal cancer. Archives of Otolaryngology-Head & Neck Surgery, 124(2), 143-148.
File may be downloaded here: CPIB Short Form
FLA Overview: Vic Baird Graduate Student Program
The history of the FLA is presented in VoicePoints, Whispers on the Web, Jan 2014.
Jeff Searl, Ph.D., CCC-SLP, Director of Education, Florida Laryngectomee Association has presented us with a comprehensive picture of the program
Over the past five years approximately 300 students have attended the VBGSP. Students from each of the SLP graduate student programs in the state of Florida are invited to attend and nearly all have sent students in the past. The program is not specifically restricted to Florida programs although as the FLA name implies, the organization is intended to serve individuals in Florida. A few students from other states have attended over the years. Students are either in their first or their second year of their Master’s program.
INDIVIDUALS WITH A LARYNGECTOMY.
The number of people with a laryngectomy at the conference varies from year-to-year, ranging from approximately 15-20. Some have been coming for years and others are quite recent from their surgery. All communication options have been represented each year: artificial larynx, esophageal speech, tracheoesophageal speech, and alternative communication options such as writing or use of an iPad application for typing/voice output. As described in more detail below, the individuals with a laryngectomy ultimately become some of the best “teachers” for the graduate students. These participants can be roughly categorized into two broad categories. The first are “old timers” who have been around the conference for at least a few years and who have settled into the “teaching” role quite nicely. The other are newcomers (at least to the conference if not to life as a laryngectomee). They often are there for the SLP faculty to evaluate and work with, but they also ultimately become some of the best teachers at the conference because they are at such a different stage in their post-surgery life. The students truly get a chance to learn with and from laryngectomees with a wide variety of backgrounds and experiences up to that point. These individuals are not technically registered for the VBGSP. They actually register for the FLA Annual Meeting (described below) but attend nearly all of the VBGSP talks.
SPOUSES, CAREGIVERS, SIGNIFICANT OTHERS.
Not all spouses and caregivers sit in on the student conference but about 75% of them do. They also are incorporated into the teaching that occurs as described in more detail below. The viewpoints and information from these individuals is extremely valuable to the students and the conference talks are executed in a manner to capitalize on their presence. Again, these individuals are registered for the FLA Annual Meeting but are free to attend any or all of the VBGSP talks.
Depending on the year, anywhere from 5-10 “faculty” are invited to lead talks and simulated clinical exchanges. Most are SLPs who work with people who have a laryngectomy. In nearly all cases these faculty are drawn from the state of Florida – either from the universities or the major hospitals where the clinical care is primarily being done. A variety of medical doctors have participated – otolaryngologists, radiologists, maxilla-facial surgeons, etc. – as well as dentists, lymphedema specialists, audiologists, emergency medical technicians, and others.
While the vendors are not technically registered as conference attendees, they are vital to the student program. In addition to the fact that their financial support to the FLA allows for the conference to be put on, the vendors provide extremely valuable input, perspective, and opportunities for the students. In some years representatives from vendors have given brief talks on their products. Every year they are available in the vending hall for face-to-face conversations with not just the laryngectomees but the students as well. They provide samples for demonstrations during many of the talks as well.
When and Where? The conference occurs each fall on the last weekend of September or the first weekend of October. The conference starts on Friday afternoon and concludes by noon on Sunday. It has been in Orlando since its inception primarily because of the relatively central location within the state and the ease of commuting/flying into the area.
Cost? The registration fee for students in 2013 was $50. The laryngectomees and spouses/caregivers pay $20-25 to register (early-late deadlines). Anyone who wants to attend the conference banquet pays an additional $35. The FLA board has intentionally set the student registration fee at a low level, recognizing that many students are constrained financially. The organization also is highly in tune with hotel costs. They have selected locations with a nightly room rate below $100 for up to four people in the room so that four students could share, each paying just $25/night. Care is also taken to start late enough on Friday and end early enough on Sunday that students typically only need to stay two nights (Friday and Saturday).
Relationship to the FLA Annual Meeting?
The VBGSP occurs at the same time as the FLA Annual Meeting. The Annual Meeting attendees are the laryngectomees as well as spouses and caregivers. The two meetings (VBGSP and Annual Meeting) share about 80% of the same talks/lectures. In this manner the students, laryngectomees, and significant others not only listen to the same talks, but participate together in many interactive experiences. The annual meeting also includes talks separate from the VBGSP on topics that might be more specific to them or to the business of the FLA organization itself.
A Typical Student Program
The program on Friday runs from about 1pm until 8pm with breaks for a cocktail hour and dinner. Many of the basics are addressed on this first day because the vast majority of students have not had much, if any, coverage of laryngectomee rehabilitation. Topics include anatomical changes and the impact on speech and swallow and basics of artificial larynx, esophageal, and tracheoesophageal speech. On Saturday and Sunday a range of issues are covered that might vary from one year to the next including: swallowing issues, pulmonary changes and rehabilitation, emotional/psychological considerations, changes in activities of daily living, use of augmentative/alternative communication devices, insufflation testing, audiological issues, dental changes, etc. We recognize that this is a first exposure for most students, and not all content can be covered. However, we do try to give a realistic picture to the students indicating that the rehabilitation process is not restricted to merely re-establishing communication.
In total, students participate in about 16 hours of talks and breakout sessions. There are several highlights to this programming that make it somewhat unique. First, as the organizer of the conference I encourage all of the faculty who lead sessions to incorporate hands on work or practice for the students as part of their talks. So for example, when reviewing artificial larynx basics each student receives an artificial larynx with which to practice what is being described. They not only practice during the talk but we check these out for each student to have over the course of the weekend for them to practice.
Similarly, when covering esophageal speech the students are led through their own attempts to produce sound with demonstrations occurring throughout the talk. Laryngectomees who use esophageal speech are asked to demonstrate various behaviors for the students. For other topics, such as emotional and psychological considerations, the facilitator of the talk may speak for 15-20 minutes, but then the remainder of the time the students are broken into small groups at each table with people who have a laryngectomy and their caregivers for small discussions. Within these round-table discussions the students have the opportunity to ask questions, practice skills covered in the lecture, gain insights only a laryngectomee can offer, and so forth. The conference faculty wander the room, sitting in on discussions at times, prompting with questions or observations, but for the most part the interactions between students and laryngectomees serve as the teaching moments without need of much other input.
These types of small group interactions also occur in what is titled “Hands-on Sessions.” The “hands-on sessions” occur three times during the conference. About 5-7 students are paired up with 1-3 people with a laryngectomy and 1-2 of the conference faculty. The intention is to evaluate the individuals with a laryngectomy, determine what they need or need to work on, and to the extent possible begin addressing those needs. The faculty leading each small group can demonstrate clinical skills/abilities as needed, but the goal is to have the students carryout the sessions as if they were working with the client. No work is done inside the stoma or changing prostheses because the groups are all done at the hotel itself (not a medical facility). However, students get a chance to sit knee-to-knee with a person who has a laryngectomy, look carefully at their stoma and neck, touch and listen, ask questions, and practice clinical skills.
What Works and What Doesn’t?
Every year the feedback from students and laryngectomees indicates that the highlight of the conference is the personal interaction that occurs in the small group discussions and hands-on sessions. The content that is delivered by the conference faculty in the lectures is important, but even there the students tend to focus on the learning that occurs in the demonstration components of those talks. As the director of the conference, I am the fortunate one who gets to hear how much the students appreciate the time and willingness of the laryngectomees to meet with them, answer questions, and allow students to look and feel and listen with a real person with a laryngectomee sitting across the table. It really is an invaluable exchange that helps the students take their learning beyond what can be accomplished in the lectures.
The students’ energy and enthusiasm are infectious and many of the laryngectomees and caregivers comment that they come back each year specifically because of the students. The mission of the FLA is truly evidenced by not just the comments of the laryngectomees but by the enthusiasm with which the patients share themselves and their experiences with the students.
The laryngectomees do much of the teaching even if they do not intend to do so, and they do even more in terms of triggering the students’ interest level in larygnectomy rehabilitation. While not all students will go on to do this kind of work, I and the FLA explicitly set out to convince some of them to pursue head and neck cancer as a primary focus professionally. By our informal count at the conference we know of at least 9 former students in the program who are doing laryngectomee care as part of their career now and those are just the ones that we know about!
Other highlights include the actual progress that is accomplished for some of the larygnectomy participants. While they serve as teachers to the students, there is also every intention of helping them get better – with their speech, pulmonary rehabilitation, swallowing, life adjustments, etc. The faculty, in combination with the students, has had remarkable success at pushing people to be better even with just brief encounters. For the faculty, it is an opportunity to network with others who do this work, learning from each other and making plans for even more conference successes the next year.
The vendors also deserve significant kudos for a successful student program. This is often times the very first chance that our graduate students come to a conference where they can interact with vendors. Many have never talked to a vendor before and they don’t realize all of the information and guidance that the vendors have for them. It truly is a great experience for them to have to go to the vending hall and speak with the vendors. Because the VBGSP is designed for students and not practicing SLPs, there are no continuing education units approved by the American Speech Language Hearing Association. Because ASHA approval is not required for the course content there is actually a fair amount of freedom regarding the role of the vendors in the program. I and the FLA strive to be fair to all the vendors and to not allow vendor interactions with students to serve as a sales pitch. And the vendors have not disappointed. They have been integral in helping the students figure out much of what is entailed in rehabilitation after a person has had a total laryngectomy.
The list of what does not work is fairly short. As the organizer I surely am biased in this regard. However, from participant feedback gathered over the years a few shortcomings are noted. First, the conference is exhausting for all involved. The days go into the evening on Friday, start early and go all day on Saturday, and then start early again on Sunday. Perhaps the amount of content is overly ambitious and could be cut back and learning might be increased even further. It simply is difficult to decide what is less important to offer the students knowing that most will have little if any further coverage in their training program unless they land in the perfect clinical training assignments. A second issue is that no organized follow-up with the students after completing the conference has been attempted to date. This appears to be the next step that should happen to deepen the students’ interest even further. Plans are just beginning for allowing post-conference follow-up of the 2014 conference. Social media capabilities seem prime for maintaining this type of contact. Finally, some students have indicated there was a certain “shock” that they experienced with some of the material covered and the experiences they had. For some students they were just a month into their graduate program and so they had little background or experience to prepare them. For others, laryngectomy rehabilitation simply was not high on their list of clinical interests and they tend to be more detached in the personal exchanges that are core to the program.
Does the VBGSP Result in Students Choosing Laryngectomy Rehabilitation Once They Graduate?
Comments from students during and immediately after the conclusion of the VBGSP suggest many students’ interest in larygnectomy rehabilitation has either been ignited or deepened by attending the conference. A more tangible outcome, however, is the fact that several student attendees have gone on to work specifically in clinical positions where laryngectomees make up a significant portion of their caseload. At the 2013 conference the returning laryngectomees and faculty identified at least 9 students who attended the VBGSP now working in such capacity within the state of Florida. While this may seem like a small number, the students have not been polled formally in any way – these are just the ones we know about from personal contact. Of note also is that we have had four former student attendees who have been coming back to serve in various capacities on the conference faculty. This allows them to share what they have been learning in their young careers, network with other more experienced clinicians, and begin developing their own teaching abilities in this area.
Overall, it seems a very promising start from the program envisioned by Dr. Ed Stone who was deeply committed to training the next generation of competent SLPs in the area of laryngectomee rehabilitation. I and the other faculty are always trying to improve the conference. The program is varied somewhat each year although the basic format of personal contact with laryngectomees and small group interaction remains. With the addition of more targeted follow-up with students after the conference the FLA hopes to entice even more to work in this area.
whispers on the web reading for SLPs
Lisa Murray, Speech-Language Pathologist, launched a website and blog in June 2018. Her goal is to provide practical, helpful information to help people who have problems with swallowing, communicating, or thinking (cognition).. Her site is: https://eatspeakthink.com/
Clinical Speech-Language Pathology: Expanding our Role in Post-Laryngectomy Care
http://webwhispers.org/news/jun2010.asp Philip C. Doyle, Ph.D., CCC-SLP
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