- Email: [email protected]
Patients’ Attitudes Regarding Treatment for Vocal Fold Atrophy
ARTICLE IN PRESS
Patients’ Attitudes Regarding Treatment for Vocal Fold Atrophy VyVy N. Young, San Francisco, California Abstract: Objective. To understand patient-identified factors affecting decision-making about treatment for vocal fold atrophy and to identify potentially correctable systematic impediments to appropriate treatment. Study design. Prospective observational study. Setting. Tertiary academic voice center. Subjects and methods. Prospective study of 34 consecutive patients with primary diagnosis of vocal fold atrophy. Participants answered an anonymous, single-page questionnaire at end of clinic visit following development of treatment plan. Results. Nineteen patients (56%) wanted to pursue treatment (eg voice therapy or surgery) and 15 patients (44%) did not. Most common reasons for pursuing treatment included desire for better voice (100%), aggravation by voice symptoms (84%) and decreased functionality of voice (63%). Most common reasons to forego treatment included feeling reassured by the lack of malignant findings (67% and 40% of those not wanting surgery and voice therapy, respectively) and the lack of a significant degree of symptomatology (80% and 53%, respectively). No patients cited insurance or transportation concerns, and few (13 and 27%, respectively) indicated other health issues taking priority. Conclusions. This pilot study represents an important first step in understanding patients’ motivations in pursuing or declining treatment, which will help clinicians better counsel and guide patients to make appropriate treatment choices. It is imperative that clinicians develop better understanding about treatment outcomes as symptomatology and functionality are primary driving factors in the treatment-seeking population. Improved methods to assess candidacy for appropriate treatment are needed. Key Words: Attitude−Motivation−Decision-making−Treatment−Vocal fold atrophy.
INTRODUCTION Approximately 18 million adults report a voice problem annually, including over 10 million elderly people.1,2 A 2012 US Census report estimated that the number of people over age 65 years will nearly double by 2050.3 The prevalence of dysphonia in the elderly has been reported in the range of 6%−29%4−8 with vocal fold atrophy as an underlying etiology in 24%−30% of these patients.4,9,10 Symptoms due to vocal fold atrophy result from changes in vocal fold anatomy and physiology, including a loss of muscle bulk and/or muscle tone, or possibly changes to the lamina propria.11−16 Patients may report hoarseness, difficulty with speaking or singing, discomfort with voice use, throat clearing, decreased volume, and increased vocal effort, among other symptoms.6 Typical treatments for vocal fold atrophy have focused either on voice therapy or surgical vocal fold augmentation or a combination of both. Treatment results are variable and no single ideal therapeutic regimen has been identified.17−22 Accepted for publication April 23, 2019. Financial disclosures: none. Conflict of interest: none. Presented at the American Laryngological Association meeting, April 19, 2018, National Harbor, MD. Level of evidence: 4. From the Department of Otolaryngology − Head and Neck Surgery, University of California − San Francisco, San Francisco, California. Address correspondence and reprint requests to VyVy N. Young, University of Pittsburgh, 1400 Locust St, Suite 11500, Pittsburgh, PA 15219. E-mail: [email protected] Journal of Voice, Vol. &&, No. &&, pp. &&−&& 0892-1997 © 2019 The Voice Foundation. Published by Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jvoice.2019.04.012
Prior studies have shown that only a small percentage of patients pursue treatment for vocal fold atrophy;4,17,18 however the reasons for this decision remain unclear. The purpose of this study is to clarify the factors which contribute to patients’ decisions about whether or not to pursue treatment for vocal fold atrophy, and specifically which issues influence the decision about particular types of treatment. By better understanding what motivates patients to choose a particular treatment option, voice clinicians will be better able to assess patients’ candidacy for certain types of treatment(s), to counsel patients appropriately about anticipated treatment outcomes, and to identify correctable systematic impediments to appropriate treatment for these patients.
MATERIALS AND METHODS This study was approved by the Institutional Review Board at the University of Pittsburgh (PRO16120113). All new patients presenting to the University of Pittsburgh Voice Center with hoarseness underwent a multidisciplinary evaluation by a team which included a fellowship-trained laryngologist and a voice-specialized speech language pathologist. This routine clinical evaluation included comprehensive history, detailed head and neck physical exam, acoustic and aerodynamic measurements of voice (including stimulability testing) and video laryngostroboscopy (either flexible or rigid, as per the laryngologist and/or patient preference). The present study was limited to patients with a primary diagnosis of vocal fold atrophy. This is a clinical diagnosis made after the above multidisciplinary evaluation, during
ARTICLE IN PRESS 2 which other underlying pathology to explain the voice symptoms is excluded and in which the following findings were commonly found: (1) bowed appearance of the true vocal folds on flexible laryngoscopy, (2) prominent vocal processes, or (3) short or incomplete closure at modal pitch on stroboscopy. Patients were excluded if they demonstrated structural laryngeal pathology (eg benign or malignant vocal fold lesions) or neurolaryngologic disorders (eg paralysis, paresis, Parkinson’s, essential tremor, spasmodic dysphonia, etc). Patients were also excluded from the study protocol if they had had any previous treatment (eg behavioral, medical, or surgical) for vocal fold atrophy. Patients underwent routine clinical evaluation and treatment planning. Recommendations for treatment of the vocal fold atrophy were based on clinical history, laryngeal examination, and multidisciplinary assessment. Most commonly offered treatments included voice therapy (behavioral), vocal fold augmentation (surgical), a combination of both behavioral and surgical approaches, or observation alone (ie no treatment). After the patient selected their preferred treatment plan, at the conclusion of the office visit, the patient was asked to complete an anonymous, singlepage, paper questionnaire asking them to identify which factor(s) had influenced their decision to pursue or not pursue certain treatment [Appendix]. The patient then deposited the survey into a box; these results were collected and entered into a Microsoft Excel spreadsheet (Microsoft. Microsoft Excel. Redmond, Washington: Microsoft, 2016) by the research assistant. Descriptive statistical analysis including frequency and standard deviation was performed with Microsoft Excel. (Redmond, Washington: Microsoft Office Professional Plus, 2016) (Table 1). RESULTS This pilot study included 34 patients with vocal fold atrophy, 19 patients (56%) who wanted to pursue treatment (eg voice therapy or surgery) and 15 patients (44%) who did not. For patients who wanted treatment, all of them indicated a desire for improved voice. Eighty-four percent (16/19) of these treatment-desiring patients reported that their voice “bothered” them and 63% (12/19) expressed an inability to do everything that they wanted to do with their current voice. Fortunately, subjectively-reported swallowing and breathing difficulties were less commonly reported (26% (5/19) and 21% (4/19), respectively) (Figure 1). For those patients who chose not to undergo surgical intervention if it was offered, the majority (12/15, 80%) of those patients did not find their symptoms bothersome enough to want to undergo an invasive procedure. Twothirds (10/15) of these patients were simply reassured that no malignancy had been found and did not desire further treatment. Interestingly none of the patients identified insurance or transportation issues as a reason for avoiding surgery, but 27% (4/15) indicated other health problems as a potential barrier to treatment (Figure 2).
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For those patients who chose not to undergo behavioral treatment (eg voice therapy), 53% (8/15) reported that their degree of symptomology was not significant enough to motivate them to pursue treatment, and 40% (6/15) were reassured by the lack of malignant findings. Again, no patients reported transportation or insurance challenges, and only 13% (2/15) prioritized other health issues (Figure 3). DISCUSSION The decision about whether or not to pursue a recommended medical treatment is deeply personal and highly individualized. Although dysphonia (particularly related to vocal fold atrophy) is common among the elderly population, the percentage of patients who seek or undergo treatment remains low.4,17,18 Barriers to treatment may include lack of understanding about efficacy of treatment, competing health interests (eg multiple co-morbidities or other treatments taking priority), competing outside interests (eg spouse’s health, family issues, or travel plans), insurance/ cost concerns, transportation issues (eg lack of transportation, reluctance to travel beyond a certain distance, or inaccessibility of mass/public transportation), or lack of time. If clinicians can better understand what factors motivate patients to choose a treatment plan (including the decision not to pursue any treatment), then it may be possible to recognize those influences which could be altered or improved to enhance accessibility and/or acceptance of treatment. For example, if travel-related concerns are common, then it may be beneficial to consider the implementation of satellite voice therapy locations and/or telemedicine options. If financial considerations (eg insurance coverage) are the primary concern, then streamlining the processes to help patients to communicate with their insurance company, to acquire prior authorizations, or to appeal denials may increase interest in treatment options. If patients’ uncertainty about what to expect from treatment affects their willingness to pursue that treatment, then development of a clearer understanding of vocal fold atrophy and its treatment, including an improved ability to identify who is most likely to benefit from treatment, may better help voice clinicians to counsel patients in their decision-making process and to identify the best candidates for treatment. Regardless of the type of treatment offered, nonadherence to treatment recommendations exists in all aspects of medicine. In laryngology, this phenomenon has been especially well-documented in relation to voice therapy. An estimated 38%−44% of patients do not even start voice therapy as recommended23,24 with rates of dropout from voice therapy ranging broadly from 16% to 65%.24,25 These figures represent a significant loss of time, resources, and money.26 Addressing the issues that contribute to barriers preventing patients from following through with treatment may decrease this undesirable phenomenon. In this pilot study, there were an approximately equal proportion of patients who chose to pursue and not to
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Vocal Fold Atrophy Treatment Attitudes
TABLE 1. Frequency and Standard Deviation of Patients’ Questionnaire Responses Patients’ Responses
Frequency Among Those Who Chose No Treatment
Frequency Among Those Who Chose Treatment
Standard Deviation
0 0 0 0 0 0 0 0 0.67 0.8 0.07 0.27 0.2 0 0 0.33 0.13 0.07 0.13 0.07 0.27 0.07 0 0.27 0.4 0.53 0 0.13 0.13 0 0 0 0.07
1.00 0.84 0.26 0.63 0.42 0.21 0.37 0.21 0.05 0.05 0 0 0 0 0 0 0 0 0 0 0.05 0 0 0 0 0 0 0 0 0 0 0 0
0.5 0.51 0.36 0.49 0.43 0.33 0.41 0.33 0.46 0.49 0.17 0.33 0.29 0 0 0.36 0.24 0.17 0.24 0.17 0.33 0.17 0 0.33 0.39 0.43 0 0.24 0.24 0 0 0 0.17
I want my voice to be better My voice bothers me My swallowing bothers me I can’t do what I want to do with this voice I want my voice to take less effort I want to be less short of breath My voice bothers my spouse Choosing treatment: other reason I just want to know it’s not cancer My symptoms don’t bother me enough No time for surgery Other health problems are priority I’m not sure it will help Previous surgery didn’t help Transportation issues I don’t want invasive procedures I’m worried about surgery I’m worried about side effects of surgery I’m worried about anesthesia I’m worried about pain I don’t want temporary treatment I don’t want voice rest Insurance issues No surgery: other reason I just want to know it’s not cancer My symptoms don’t bother me enough No time for voice therapy Other health problems are priority I’m not sure it will help Previous voice therapy didn’t help Transportation issues Insurance issues No voice therapy: other reason
pursue treatment, thus providing a preliminary overview of these patients’ mindsets. The patients who chose to pursue treatment cited their degree of symptomatology and the impact of their voice symptoms on their ability to function as their primary rationale for proceeding with treatment. The patients who decided not to undergo either voice therapy and/or surgery were predominantly concerned with knowing that there was no underlying malignancy. Additionally, they indicated that their voice symptoms were not sufficiently bothersome to warrant additional treatment. Access, insurance, and transportation issues had been hypothesized to be impediments to care; however no patients in this study identified these factors as influential in their decision-making. This may be a reflection of the general mentality of the local population (ie a local-regional phenomenon) and thus may or may not be representative of the general population across the country. Findings would be expected to differ in varying geographic locales (eg large metropolitan areas vs more suburban settings, in places
with higher density of traffic, and in relation to accessibility of mass or public transportation) and with different thirdparty payer populations (given the variability in insurance coverage for treatment). That this study was performed in a single institution, in a single geographic location, must be acknowledged to potentially impact its overall generalizability but does not negate the important findings that may help guide clinicians’ ability to counsel these patients regarding treatment. Other limitations of this study are also acknowledged. First, the studied population was small in size. However strict inclusion and exclusion criteria were utilized to limit the focus of this study to only new patients with primary vocal fold atrophy and to try to eliminate any potential confounding effects of concurrent voice disorders. Also, the survey utilized in this study is not validated; however, a validated questionnaire to address the specific questions in this study does not currently exist. This survey was initially developed as an open-ended question; then, in an effort to
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I want my voice to be beer
100%
My voice bothers me
84%
My swallowing bothers me
26%
I can't do what I want to do with this voice
63%
I want my voice to take less effort
42%
I want to be less short of breath
21%
My voice bothers my spouse
37%
Other
21% 0%
20%
40%
60%
80%
100%
120%
Frequency of response
FIGURE 1. Patient-reported reasons for seeking treatment for vocal fold atrophy. I just want to know it's not cancer My symptoms don't bother me enough No me for surgery Other health problems are priority I'm not sure it will help Transportaon issues I don't want invasive procedures I'm worried about surgery I'm worried about side effects of surgery I'm worried about anesthesia I'm worried about pain I don't want temporary treatment I don't want voice rest Insurance issues Other
67% 80% 7% 27% 20% 0% 33% 13% 7% 13% 7% 27% 7% 0% 27% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Frequency of response
FIGURE 2. Patient-reported reasons for not pursuing surgical treatment for vocal fold atrophy.
I just want to know it's not cancer
40%
My symptoms don't bother me enough
53%
No me for voice therapy
0%
Other health problems are priority
13%
I'm not sure it will help
13%
Transportaon issues
0%
Insurance issues
0%
Other
7% 0%
10%
20%
30%
40%
50%
Frequency of response
FIGURE 3. Patient-reported reasons for not pursuing voice therapy for vocal fold atrophy.
60%
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Vocal Fold Atrophy Treatment Attitudes
facilitate patients’ participation by shortening the time required to answer the survey, previously frequently cited reasons for decision-making (eg “I just want to know it’s not cancer,” “I want my voice to be better,” “I don’t have time,” etc) were included as preset selection options although the open-ended response was still maintained. This technique resulted in different numbers of options for each section, given that many considerations related to surgery (eg invasiveness of procedure, presence of anesthesia, or concerns about side effects or pain) are not applicable with voice therapy. Furthermore, the reasons why people choose treatment are not similar to the reasons why people choose not to pursue treatment, and thus the same question set cannot be applied uniformly to both groups. The findings of this nonvalidated survey may provide a foundational basis for the development of an appropriately validated questionnaire for this patient group in future. Because this survey was administered at the end of the initial visit, and in anonymous fashion, there was no way to determine whether patients actually followed through with the treatment path that they chose, whether or not they changed their mind in future about their plan of treatment, whether or not their decision-making correlated to the severity of their voice symptoms (subjectively or objectively), nor to follow voice outcomes of any treatment over time. However, the purpose of this study was solely focused on what factor(s) impacted the initial decision-making process, so longitudinal tracking of patients was not intended to be part of the study design. This aspect could be an important avenue of future study. Future studies should also include details characterizing patients’ voices as well as other related symptoms (eg dysphagia or dyspnea). To preserve patients’ confidentiality and to encourage participation, this survey was administered in a purely anonymous fashion. However, the anonymity precluded the ability to acquire demographic information as well as voice-related patient measures. Subjective assessment of the patients’ self-perceived voice handicap (eg Voice Handicap Index-10) and its impact on patients’ decision-making is central to understanding patients’ motivations regarding treatment and the lack of this information here is a recognized limitation of the current study. Future studies on this topic should include validated patient-reported-outcome measures related to voice as well as objective voice data to determine correlations between these features and patients’ decisions regarding treatment. This study highlights the symptomatic and functional impact of vocal fold atrophy as well as patients’ desire for effective treatments. Unfortunately, it is clear from the literature that treatment for vocal fold atrophy remains variably effective.17−22 The introduction of trial vocal fold injection has allowed patients to explore the impact of vocal fold augmentation in a temporary fashion; the ease and facility of this procedure (including its availability under local anesthesia) has held particular appeal for both patients and otolaryngologists.27 Furthermore, given that some studies have
shown related predictability of long-term augmentation outcomes, trial temporary vocal fold injection may be a helpful tool in guiding patient’s decision-making about long-term treatment. However, not all patients who achieve favorable results after trial injection will demonstrate similar response to long-tern treatment.22 Likewise, not all patients with vocal fold atrophy respond well to voice therapy.17−20 This study again demonstrates the need for better understanding of vocal fold atrophy and its treatment. If clinicians could better determine who would be a good candidate for treatment for vocal fold atrophy, as well as what treatment would be optimal for each patient, such an advance may enhance interest in and satisfaction with treatment. Nevertheless it is also imperative to keep in mind that the underlying goal for many patients is to seek reassurance about absence of malignancy; this essential mission should be neither overlooked nor minimized. CONCLUSIONS In this single institution study, patients’ attitudes about treatment for vocal fold atrophy centered around degree of symptomatology, functionality of voice, and reassurance about lack of malignancy. This study quantified the percentage of patients with vocal fold atrophy who solely sought the knowledge that they did not have cancer; this incidence has previously been described anecdotally but not yet quantified. These findings should be further investigated across a broader geographic area, with a more diverse patient population and third-party payer mix. This initial study highlights the importance of improved understanding and outcomes related to the management of vocal fold atrophy to both patients and clinicians. APPENDIX. VOCAL FOLD ATROPHY ATTITUDES QUESTIONNAIRE Factors that contributed to your decision about treatment today Please select ALL that apply. I CHOSE TO UNDERGO TREATMENT (either voice therapy or surgery) for my vocal fold atrophy because:
I want my voice to be better. My voice bothers me. My swallowing bothers me. I can’t do what I want to do with this voice. I want my voice/swallowing to take less effort. I want my shortness of breath to be better. My voice bothers my spouse/communication partner. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________
I CHOSE NOT TO UNDERGO SURGERY for my vocal fold atrophy because: I just wanted to know that there was nothing to worry about (ie no cancer).
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My symptoms don’t bother me enough to pursue any further treatment. I don’t have time to go through any treatment(s) at this time. I have other health problems that I want to address first. I’m not sure that this will be helpful. Transportation is an issue/I live too far away. I don’t want to have anything invasive done. I am worried about having surgery/a procedure. I am worried about side effects of surgery. I am worried about undergoing anesthesia. I am worried about having pain. I don’t want to have something done that is only temporary. I don’t want to be on voice rest. Insurance won’t pay for it. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________ I CHOSE NOT TO UNDERGO VOICE THERAPY for my vocal fold atrophy because: I just wanted to know that there was nothing to worry about (ie no cancer). My symptoms don’t bother me enough to pursue any further treatment. I don’t have time to go through any treatment(s) at this time. I have other health problems that I want to address first. I don’t think that this will be helpful. Transportation is an issue/I live too far away. Insurance won’t pay for it. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________ REFERENCES 1. Bhattacharyya N. The prevalence of voice problems among adults in the United States. Laryngoscope. 2014;124:2359–2362. 2. Ramig LO, Gray S, Baker K, et al. The aging voice: a review, treatment data and familial and genetic perspectives. Folia Phoniatr Logop. 2001;53:252–265. 3. https://www.census.gov/prod/2014pubs/p25-1140.pdf. 4. Davids T, Klein AM, Johns MM3rd. Current dysphonia trends in patients over the age of 65: is vocal atrophy becoming more prevalent? Laryngoscope. 2012;122:332–335. 5. Golub JS, Chen PH, Otto KJ, et al. Prevalence of perceived dysphonia in a geriatric population. J Am Geriatr Soc. 2006;54:1736–1739.
6. de Araujo Pernambuco L, Espelt A, Balata PM, et al. Prevalence of voice disorders in the elderly: a systematic review of population-based studies. Eur Arch Otorhinolaryngol. 2015;272:2601–2609. 7. Roy N, Stemple J, Merrill RM, et al. Epidemiology of voice disorders in the elderly: preliminary findings. Laryngoscope. 2007;117:628–633. 8. Hannaford PC, Simpson JA, Bisset AF, et al. The prevalence of ear, nose and throat problems in the community: results from a national cross-sectional postal survey in Scotland. Fam Pract. 2005;22:227–233. 9. Hagen P, Lyons GD, Nuss DW. Dysphonia in the elderly: diagnosis and management of age-related voice changes. South Med J. 1996; 89:204–207. 10. Pontes P, Brasolotto A, Behlau M. Glottic characteristics and voice complaint in the elderly. J Voice. 2005;19:84–94. 11. Goncalves TM, Dos Santos DC, Pessin AB, et al. Scanning electron microscopy of the presbylarynx. Otolaryngol Head Neck Surg. 2016;154:1073–1078. 12. Roberts T, Morton R, Al-Ali S. Microstructure of the vocal fold in elderly humans. Clin Anat. 2011;24:544–551. 13. Ximenes Filho JA, Tsuji DH, do Nascimento PH, et al. Histologic changes in human vocal folds correlated with aging: a histomorphometric study. Ann Otol Rhinol Laryngol. 2003;112:894–898. 14. Sato K, Hirano M, Nakashima T. Age related changes of collagenous fibers in the human vocal fold mucosa. Ann Otol Rhinol Laryngol. 2002;111:15–20. 15. Sato K, Hirano M. Age-related changes of elastic fibers in the superficial layer of the lamina propria of the vocal folds. Ann Otol Rhinol Laryngol. 1997;104:839–844. 16. Hirano M, Kurita S, Sakaguchi S. Ageing of the vibratory tissue of human vocal folds. Acta Otolaryngol. 1989;107:428–433. 17. Gartner-Schmidt J, Rosen C. Treatment success for age-related vocal fold atrophy. Laryngoscope. 2011;121:585–589. 18. Mau T, Jacobson BH, Garrett CG. Factors associated with voice therapy outcomes in the treatment of presbyphonia. Laryngoscope. 2010; 120:1181–1187. 19. Ziegler A, Verdolini Abbott K, Johns M, et al. Preliminary data on two voice therapy interventions in the treatment of presbyphonia. Laryngoscope. 2014;124:1869–1876. 20. Gorman S, Weinrich B, Lee L, et al. Aerodynamic changes as a result of vocal function exercises in elderly men. Laryngoscope. 2008;118: 1900–1903. 21. Hsiung MW, Pai L. Autogenous fat injection for glottic insufficiency: analysis of 101 cases and correlation with patients' self-assessment. Acta Otolaryngol. 2006;126:191–196. 22. Young VN, Gartner-Schmidt J, Rosen CA. Comparison of voice outcomes after trial and long-term vocal fold augmentation in vocal fold atrophy. Laryngoscope. 2015;125:934–940. 23. Smith BE, Kempster GB, Sims HS. Patient factors related to voice therapy attendance and outcomes. J Voice. 2010;24:694–701. 24. Portone C, Johns MM3rd, Hapner ER. A review of patient adherence to the recommendation for voice therapy. J Voice. 2008;22:192–196. 25. Hapner E, Portone-Maira C, Johns MM3rd. A study of voice therapy dropout. J Voice. 2009;23:337–340. 26. Litts JK, Gartner-Schmidt JL, Clary MS, et al. Impact of laryngologist and speech pathologist coassessment on outcomes and billing revenue. Laryngoscope. 2015;125:2139–2142. 27. Carroll TL, Rosen CA. Trial vocal fold injection. J Voice. 2010 Jul;24:494–498.
Patients’ Attitudes Regarding Treatment for Vocal Fold Atrophy VyVy N. Young, San Francisco, California Abstract: Objective. To understand patient-identified factors affecting decision-making about treatment for vocal fold atrophy and to identify potentially correctable systematic impediments to appropriate treatment. Study design. Prospective observational study. Setting. Tertiary academic voice center. Subjects and methods. Prospective study of 34 consecutive patients with primary diagnosis of vocal fold atrophy. Participants answered an anonymous, single-page questionnaire at end of clinic visit following development of treatment plan. Results. Nineteen patients (56%) wanted to pursue treatment (eg voice therapy or surgery) and 15 patients (44%) did not. Most common reasons for pursuing treatment included desire for better voice (100%), aggravation by voice symptoms (84%) and decreased functionality of voice (63%). Most common reasons to forego treatment included feeling reassured by the lack of malignant findings (67% and 40% of those not wanting surgery and voice therapy, respectively) and the lack of a significant degree of symptomatology (80% and 53%, respectively). No patients cited insurance or transportation concerns, and few (13 and 27%, respectively) indicated other health issues taking priority. Conclusions. This pilot study represents an important first step in understanding patients’ motivations in pursuing or declining treatment, which will help clinicians better counsel and guide patients to make appropriate treatment choices. It is imperative that clinicians develop better understanding about treatment outcomes as symptomatology and functionality are primary driving factors in the treatment-seeking population. Improved methods to assess candidacy for appropriate treatment are needed. Key Words: Attitude−Motivation−Decision-making−Treatment−Vocal fold atrophy.
INTRODUCTION Approximately 18 million adults report a voice problem annually, including over 10 million elderly people.1,2 A 2012 US Census report estimated that the number of people over age 65 years will nearly double by 2050.3 The prevalence of dysphonia in the elderly has been reported in the range of 6%−29%4−8 with vocal fold atrophy as an underlying etiology in 24%−30% of these patients.4,9,10 Symptoms due to vocal fold atrophy result from changes in vocal fold anatomy and physiology, including a loss of muscle bulk and/or muscle tone, or possibly changes to the lamina propria.11−16 Patients may report hoarseness, difficulty with speaking or singing, discomfort with voice use, throat clearing, decreased volume, and increased vocal effort, among other symptoms.6 Typical treatments for vocal fold atrophy have focused either on voice therapy or surgical vocal fold augmentation or a combination of both. Treatment results are variable and no single ideal therapeutic regimen has been identified.17−22 Accepted for publication April 23, 2019. Financial disclosures: none. Conflict of interest: none. Presented at the American Laryngological Association meeting, April 19, 2018, National Harbor, MD. Level of evidence: 4. From the Department of Otolaryngology − Head and Neck Surgery, University of California − San Francisco, San Francisco, California. Address correspondence and reprint requests to VyVy N. Young, University of Pittsburgh, 1400 Locust St, Suite 11500, Pittsburgh, PA 15219. E-mail: [email protected] Journal of Voice, Vol. &&, No. &&, pp. &&−&& 0892-1997 © 2019 The Voice Foundation. Published by Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jvoice.2019.04.012
Prior studies have shown that only a small percentage of patients pursue treatment for vocal fold atrophy;4,17,18 however the reasons for this decision remain unclear. The purpose of this study is to clarify the factors which contribute to patients’ decisions about whether or not to pursue treatment for vocal fold atrophy, and specifically which issues influence the decision about particular types of treatment. By better understanding what motivates patients to choose a particular treatment option, voice clinicians will be better able to assess patients’ candidacy for certain types of treatment(s), to counsel patients appropriately about anticipated treatment outcomes, and to identify correctable systematic impediments to appropriate treatment for these patients.
MATERIALS AND METHODS This study was approved by the Institutional Review Board at the University of Pittsburgh (PRO16120113). All new patients presenting to the University of Pittsburgh Voice Center with hoarseness underwent a multidisciplinary evaluation by a team which included a fellowship-trained laryngologist and a voice-specialized speech language pathologist. This routine clinical evaluation included comprehensive history, detailed head and neck physical exam, acoustic and aerodynamic measurements of voice (including stimulability testing) and video laryngostroboscopy (either flexible or rigid, as per the laryngologist and/or patient preference). The present study was limited to patients with a primary diagnosis of vocal fold atrophy. This is a clinical diagnosis made after the above multidisciplinary evaluation, during
ARTICLE IN PRESS 2 which other underlying pathology to explain the voice symptoms is excluded and in which the following findings were commonly found: (1) bowed appearance of the true vocal folds on flexible laryngoscopy, (2) prominent vocal processes, or (3) short or incomplete closure at modal pitch on stroboscopy. Patients were excluded if they demonstrated structural laryngeal pathology (eg benign or malignant vocal fold lesions) or neurolaryngologic disorders (eg paralysis, paresis, Parkinson’s, essential tremor, spasmodic dysphonia, etc). Patients were also excluded from the study protocol if they had had any previous treatment (eg behavioral, medical, or surgical) for vocal fold atrophy. Patients underwent routine clinical evaluation and treatment planning. Recommendations for treatment of the vocal fold atrophy were based on clinical history, laryngeal examination, and multidisciplinary assessment. Most commonly offered treatments included voice therapy (behavioral), vocal fold augmentation (surgical), a combination of both behavioral and surgical approaches, or observation alone (ie no treatment). After the patient selected their preferred treatment plan, at the conclusion of the office visit, the patient was asked to complete an anonymous, singlepage, paper questionnaire asking them to identify which factor(s) had influenced their decision to pursue or not pursue certain treatment [Appendix]. The patient then deposited the survey into a box; these results were collected and entered into a Microsoft Excel spreadsheet (Microsoft. Microsoft Excel. Redmond, Washington: Microsoft, 2016) by the research assistant. Descriptive statistical analysis including frequency and standard deviation was performed with Microsoft Excel. (Redmond, Washington: Microsoft Office Professional Plus, 2016) (Table 1). RESULTS This pilot study included 34 patients with vocal fold atrophy, 19 patients (56%) who wanted to pursue treatment (eg voice therapy or surgery) and 15 patients (44%) who did not. For patients who wanted treatment, all of them indicated a desire for improved voice. Eighty-four percent (16/19) of these treatment-desiring patients reported that their voice “bothered” them and 63% (12/19) expressed an inability to do everything that they wanted to do with their current voice. Fortunately, subjectively-reported swallowing and breathing difficulties were less commonly reported (26% (5/19) and 21% (4/19), respectively) (Figure 1). For those patients who chose not to undergo surgical intervention if it was offered, the majority (12/15, 80%) of those patients did not find their symptoms bothersome enough to want to undergo an invasive procedure. Twothirds (10/15) of these patients were simply reassured that no malignancy had been found and did not desire further treatment. Interestingly none of the patients identified insurance or transportation issues as a reason for avoiding surgery, but 27% (4/15) indicated other health problems as a potential barrier to treatment (Figure 2).
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For those patients who chose not to undergo behavioral treatment (eg voice therapy), 53% (8/15) reported that their degree of symptomology was not significant enough to motivate them to pursue treatment, and 40% (6/15) were reassured by the lack of malignant findings. Again, no patients reported transportation or insurance challenges, and only 13% (2/15) prioritized other health issues (Figure 3). DISCUSSION The decision about whether or not to pursue a recommended medical treatment is deeply personal and highly individualized. Although dysphonia (particularly related to vocal fold atrophy) is common among the elderly population, the percentage of patients who seek or undergo treatment remains low.4,17,18 Barriers to treatment may include lack of understanding about efficacy of treatment, competing health interests (eg multiple co-morbidities or other treatments taking priority), competing outside interests (eg spouse’s health, family issues, or travel plans), insurance/ cost concerns, transportation issues (eg lack of transportation, reluctance to travel beyond a certain distance, or inaccessibility of mass/public transportation), or lack of time. If clinicians can better understand what factors motivate patients to choose a treatment plan (including the decision not to pursue any treatment), then it may be possible to recognize those influences which could be altered or improved to enhance accessibility and/or acceptance of treatment. For example, if travel-related concerns are common, then it may be beneficial to consider the implementation of satellite voice therapy locations and/or telemedicine options. If financial considerations (eg insurance coverage) are the primary concern, then streamlining the processes to help patients to communicate with their insurance company, to acquire prior authorizations, or to appeal denials may increase interest in treatment options. If patients’ uncertainty about what to expect from treatment affects their willingness to pursue that treatment, then development of a clearer understanding of vocal fold atrophy and its treatment, including an improved ability to identify who is most likely to benefit from treatment, may better help voice clinicians to counsel patients in their decision-making process and to identify the best candidates for treatment. Regardless of the type of treatment offered, nonadherence to treatment recommendations exists in all aspects of medicine. In laryngology, this phenomenon has been especially well-documented in relation to voice therapy. An estimated 38%−44% of patients do not even start voice therapy as recommended23,24 with rates of dropout from voice therapy ranging broadly from 16% to 65%.24,25 These figures represent a significant loss of time, resources, and money.26 Addressing the issues that contribute to barriers preventing patients from following through with treatment may decrease this undesirable phenomenon. In this pilot study, there were an approximately equal proportion of patients who chose to pursue and not to
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TABLE 1. Frequency and Standard Deviation of Patients’ Questionnaire Responses Patients’ Responses
Frequency Among Those Who Chose No Treatment
Frequency Among Those Who Chose Treatment
Standard Deviation
0 0 0 0 0 0 0 0 0.67 0.8 0.07 0.27 0.2 0 0 0.33 0.13 0.07 0.13 0.07 0.27 0.07 0 0.27 0.4 0.53 0 0.13 0.13 0 0 0 0.07
1.00 0.84 0.26 0.63 0.42 0.21 0.37 0.21 0.05 0.05 0 0 0 0 0 0 0 0 0 0 0.05 0 0 0 0 0 0 0 0 0 0 0 0
0.5 0.51 0.36 0.49 0.43 0.33 0.41 0.33 0.46 0.49 0.17 0.33 0.29 0 0 0.36 0.24 0.17 0.24 0.17 0.33 0.17 0 0.33 0.39 0.43 0 0.24 0.24 0 0 0 0.17
I want my voice to be better My voice bothers me My swallowing bothers me I can’t do what I want to do with this voice I want my voice to take less effort I want to be less short of breath My voice bothers my spouse Choosing treatment: other reason I just want to know it’s not cancer My symptoms don’t bother me enough No time for surgery Other health problems are priority I’m not sure it will help Previous surgery didn’t help Transportation issues I don’t want invasive procedures I’m worried about surgery I’m worried about side effects of surgery I’m worried about anesthesia I’m worried about pain I don’t want temporary treatment I don’t want voice rest Insurance issues No surgery: other reason I just want to know it’s not cancer My symptoms don’t bother me enough No time for voice therapy Other health problems are priority I’m not sure it will help Previous voice therapy didn’t help Transportation issues Insurance issues No voice therapy: other reason
pursue treatment, thus providing a preliminary overview of these patients’ mindsets. The patients who chose to pursue treatment cited their degree of symptomatology and the impact of their voice symptoms on their ability to function as their primary rationale for proceeding with treatment. The patients who decided not to undergo either voice therapy and/or surgery were predominantly concerned with knowing that there was no underlying malignancy. Additionally, they indicated that their voice symptoms were not sufficiently bothersome to warrant additional treatment. Access, insurance, and transportation issues had been hypothesized to be impediments to care; however no patients in this study identified these factors as influential in their decision-making. This may be a reflection of the general mentality of the local population (ie a local-regional phenomenon) and thus may or may not be representative of the general population across the country. Findings would be expected to differ in varying geographic locales (eg large metropolitan areas vs more suburban settings, in places
with higher density of traffic, and in relation to accessibility of mass or public transportation) and with different thirdparty payer populations (given the variability in insurance coverage for treatment). That this study was performed in a single institution, in a single geographic location, must be acknowledged to potentially impact its overall generalizability but does not negate the important findings that may help guide clinicians’ ability to counsel these patients regarding treatment. Other limitations of this study are also acknowledged. First, the studied population was small in size. However strict inclusion and exclusion criteria were utilized to limit the focus of this study to only new patients with primary vocal fold atrophy and to try to eliminate any potential confounding effects of concurrent voice disorders. Also, the survey utilized in this study is not validated; however, a validated questionnaire to address the specific questions in this study does not currently exist. This survey was initially developed as an open-ended question; then, in an effort to
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I want my voice to be beer
100%
My voice bothers me
84%
My swallowing bothers me
26%
I can't do what I want to do with this voice
63%
I want my voice to take less effort
42%
I want to be less short of breath
21%
My voice bothers my spouse
37%
Other
21% 0%
20%
40%
60%
80%
100%
120%
Frequency of response
FIGURE 1. Patient-reported reasons for seeking treatment for vocal fold atrophy. I just want to know it's not cancer My symptoms don't bother me enough No me for surgery Other health problems are priority I'm not sure it will help Transportaon issues I don't want invasive procedures I'm worried about surgery I'm worried about side effects of surgery I'm worried about anesthesia I'm worried about pain I don't want temporary treatment I don't want voice rest Insurance issues Other
67% 80% 7% 27% 20% 0% 33% 13% 7% 13% 7% 27% 7% 0% 27% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Frequency of response
FIGURE 2. Patient-reported reasons for not pursuing surgical treatment for vocal fold atrophy.
I just want to know it's not cancer
40%
My symptoms don't bother me enough
53%
No me for voice therapy
0%
Other health problems are priority
13%
I'm not sure it will help
13%
Transportaon issues
0%
Insurance issues
0%
Other
7% 0%
10%
20%
30%
40%
50%
Frequency of response
FIGURE 3. Patient-reported reasons for not pursuing voice therapy for vocal fold atrophy.
60%
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facilitate patients’ participation by shortening the time required to answer the survey, previously frequently cited reasons for decision-making (eg “I just want to know it’s not cancer,” “I want my voice to be better,” “I don’t have time,” etc) were included as preset selection options although the open-ended response was still maintained. This technique resulted in different numbers of options for each section, given that many considerations related to surgery (eg invasiveness of procedure, presence of anesthesia, or concerns about side effects or pain) are not applicable with voice therapy. Furthermore, the reasons why people choose treatment are not similar to the reasons why people choose not to pursue treatment, and thus the same question set cannot be applied uniformly to both groups. The findings of this nonvalidated survey may provide a foundational basis for the development of an appropriately validated questionnaire for this patient group in future. Because this survey was administered at the end of the initial visit, and in anonymous fashion, there was no way to determine whether patients actually followed through with the treatment path that they chose, whether or not they changed their mind in future about their plan of treatment, whether or not their decision-making correlated to the severity of their voice symptoms (subjectively or objectively), nor to follow voice outcomes of any treatment over time. However, the purpose of this study was solely focused on what factor(s) impacted the initial decision-making process, so longitudinal tracking of patients was not intended to be part of the study design. This aspect could be an important avenue of future study. Future studies should also include details characterizing patients’ voices as well as other related symptoms (eg dysphagia or dyspnea). To preserve patients’ confidentiality and to encourage participation, this survey was administered in a purely anonymous fashion. However, the anonymity precluded the ability to acquire demographic information as well as voice-related patient measures. Subjective assessment of the patients’ self-perceived voice handicap (eg Voice Handicap Index-10) and its impact on patients’ decision-making is central to understanding patients’ motivations regarding treatment and the lack of this information here is a recognized limitation of the current study. Future studies on this topic should include validated patient-reported-outcome measures related to voice as well as objective voice data to determine correlations between these features and patients’ decisions regarding treatment. This study highlights the symptomatic and functional impact of vocal fold atrophy as well as patients’ desire for effective treatments. Unfortunately, it is clear from the literature that treatment for vocal fold atrophy remains variably effective.17−22 The introduction of trial vocal fold injection has allowed patients to explore the impact of vocal fold augmentation in a temporary fashion; the ease and facility of this procedure (including its availability under local anesthesia) has held particular appeal for both patients and otolaryngologists.27 Furthermore, given that some studies have
shown related predictability of long-term augmentation outcomes, trial temporary vocal fold injection may be a helpful tool in guiding patient’s decision-making about long-term treatment. However, not all patients who achieve favorable results after trial injection will demonstrate similar response to long-tern treatment.22 Likewise, not all patients with vocal fold atrophy respond well to voice therapy.17−20 This study again demonstrates the need for better understanding of vocal fold atrophy and its treatment. If clinicians could better determine who would be a good candidate for treatment for vocal fold atrophy, as well as what treatment would be optimal for each patient, such an advance may enhance interest in and satisfaction with treatment. Nevertheless it is also imperative to keep in mind that the underlying goal for many patients is to seek reassurance about absence of malignancy; this essential mission should be neither overlooked nor minimized. CONCLUSIONS In this single institution study, patients’ attitudes about treatment for vocal fold atrophy centered around degree of symptomatology, functionality of voice, and reassurance about lack of malignancy. This study quantified the percentage of patients with vocal fold atrophy who solely sought the knowledge that they did not have cancer; this incidence has previously been described anecdotally but not yet quantified. These findings should be further investigated across a broader geographic area, with a more diverse patient population and third-party payer mix. This initial study highlights the importance of improved understanding and outcomes related to the management of vocal fold atrophy to both patients and clinicians. APPENDIX. VOCAL FOLD ATROPHY ATTITUDES QUESTIONNAIRE Factors that contributed to your decision about treatment today Please select ALL that apply. I CHOSE TO UNDERGO TREATMENT (either voice therapy or surgery) for my vocal fold atrophy because:
I want my voice to be better. My voice bothers me. My swallowing bothers me. I can’t do what I want to do with this voice. I want my voice/swallowing to take less effort. I want my shortness of breath to be better. My voice bothers my spouse/communication partner. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________
I CHOSE NOT TO UNDERGO SURGERY for my vocal fold atrophy because: I just wanted to know that there was nothing to worry about (ie no cancer).
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My symptoms don’t bother me enough to pursue any further treatment. I don’t have time to go through any treatment(s) at this time. I have other health problems that I want to address first. I’m not sure that this will be helpful. Transportation is an issue/I live too far away. I don’t want to have anything invasive done. I am worried about having surgery/a procedure. I am worried about side effects of surgery. I am worried about undergoing anesthesia. I am worried about having pain. I don’t want to have something done that is only temporary. I don’t want to be on voice rest. Insurance won’t pay for it. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________ I CHOSE NOT TO UNDERGO VOICE THERAPY for my vocal fold atrophy because: I just wanted to know that there was nothing to worry about (ie no cancer). My symptoms don’t bother me enough to pursue any further treatment. I don’t have time to go through any treatment(s) at this time. I have other health problems that I want to address first. I don’t think that this will be helpful. Transportation is an issue/I live too far away. Insurance won’t pay for it. OTHER REASON NOT LISTED ABOVE: (please explain)___________________________________ REFERENCES 1. Bhattacharyya N. The prevalence of voice problems among adults in the United States. Laryngoscope. 2014;124:2359–2362. 2. Ramig LO, Gray S, Baker K, et al. The aging voice: a review, treatment data and familial and genetic perspectives. Folia Phoniatr Logop. 2001;53:252–265. 3. https://www.census.gov/prod/2014pubs/p25-1140.pdf. 4. Davids T, Klein AM, Johns MM3rd. Current dysphonia trends in patients over the age of 65: is vocal atrophy becoming more prevalent? Laryngoscope. 2012;122:332–335. 5. Golub JS, Chen PH, Otto KJ, et al. Prevalence of perceived dysphonia in a geriatric population. J Am Geriatr Soc. 2006;54:1736–1739.
6. de Araujo Pernambuco L, Espelt A, Balata PM, et al. Prevalence of voice disorders in the elderly: a systematic review of population-based studies. Eur Arch Otorhinolaryngol. 2015;272:2601–2609. 7. Roy N, Stemple J, Merrill RM, et al. Epidemiology of voice disorders in the elderly: preliminary findings. Laryngoscope. 2007;117:628–633. 8. Hannaford PC, Simpson JA, Bisset AF, et al. The prevalence of ear, nose and throat problems in the community: results from a national cross-sectional postal survey in Scotland. Fam Pract. 2005;22:227–233. 9. Hagen P, Lyons GD, Nuss DW. Dysphonia in the elderly: diagnosis and management of age-related voice changes. South Med J. 1996; 89:204–207. 10. Pontes P, Brasolotto A, Behlau M. Glottic characteristics and voice complaint in the elderly. J Voice. 2005;19:84–94. 11. Goncalves TM, Dos Santos DC, Pessin AB, et al. Scanning electron microscopy of the presbylarynx. Otolaryngol Head Neck Surg. 2016;154:1073–1078. 12. Roberts T, Morton R, Al-Ali S. Microstructure of the vocal fold in elderly humans. Clin Anat. 2011;24:544–551. 13. Ximenes Filho JA, Tsuji DH, do Nascimento PH, et al. Histologic changes in human vocal folds correlated with aging: a histomorphometric study. Ann Otol Rhinol Laryngol. 2003;112:894–898. 14. Sato K, Hirano M, Nakashima T. Age related changes of collagenous fibers in the human vocal fold mucosa. Ann Otol Rhinol Laryngol. 2002;111:15–20. 15. Sato K, Hirano M. Age-related changes of elastic fibers in the superficial layer of the lamina propria of the vocal folds. Ann Otol Rhinol Laryngol. 1997;104:839–844. 16. Hirano M, Kurita S, Sakaguchi S. Ageing of the vibratory tissue of human vocal folds. Acta Otolaryngol. 1989;107:428–433. 17. Gartner-Schmidt J, Rosen C. Treatment success for age-related vocal fold atrophy. Laryngoscope. 2011;121:585–589. 18. Mau T, Jacobson BH, Garrett CG. Factors associated with voice therapy outcomes in the treatment of presbyphonia. Laryngoscope. 2010; 120:1181–1187. 19. Ziegler A, Verdolini Abbott K, Johns M, et al. Preliminary data on two voice therapy interventions in the treatment of presbyphonia. Laryngoscope. 2014;124:1869–1876. 20. Gorman S, Weinrich B, Lee L, et al. Aerodynamic changes as a result of vocal function exercises in elderly men. Laryngoscope. 2008;118: 1900–1903. 21. Hsiung MW, Pai L. Autogenous fat injection for glottic insufficiency: analysis of 101 cases and correlation with patients' self-assessment. Acta Otolaryngol. 2006;126:191–196. 22. Young VN, Gartner-Schmidt J, Rosen CA. Comparison of voice outcomes after trial and long-term vocal fold augmentation in vocal fold atrophy. Laryngoscope. 2015;125:934–940. 23. Smith BE, Kempster GB, Sims HS. Patient factors related to voice therapy attendance and outcomes. J Voice. 2010;24:694–701. 24. Portone C, Johns MM3rd, Hapner ER. A review of patient adherence to the recommendation for voice therapy. J Voice. 2008;22:192–196. 25. Hapner E, Portone-Maira C, Johns MM3rd. A study of voice therapy dropout. J Voice. 2009;23:337–340. 26. Litts JK, Gartner-Schmidt JL, Clary MS, et al. Impact of laryngologist and speech pathologist coassessment on outcomes and billing revenue. Laryngoscope. 2015;125:2139–2142. 27. Carroll TL, Rosen CA. Trial vocal fold injection. J Voice. 2010 Jul;24:494–498.