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Francis DO, Sherman AE, Hovis KL, et al. Life Experience of Patients With Unilateral Vocal Fold Paralysis. JAMA Otolaryngol Head Neck Surg. 2018;144(5):433–439. doi:10.1001/jamaoto.2018.0067
What is it like to live with unilateral vocal fold paralysis from the patients’ perspective?
In this survey study of 36 patients, frustration, isolation, fear, and altered self-identity were the primary themes expressed by patients with unilateral vocal fold paralysis.
The consequences of unilateral vocal fold paralysis extend beyond somatic complaints to affect a person’s sense of identity and psychological well-being; identifying, exploring, and validating these experiences may help shared decision-making processes, further personalizing patient management, and improve outcomes.
Clinicians and patients benefit when they have a clear understanding of how medical conditions influence patients’ life experiences. Patients’ perspectives on life with unilateral vocal fold paralysis have not been well described.
To promote patient-centered care by characterizing the patient experiences of living with unilateral vocal fold paralysis.
Design, Setting, and Participants
This study used mixed methods: surveys using the voice and dysphagia handicap indexes (VHI and DHI) and semistructured interviews with adults with unilateral vocal cord paralysis recruited from a tertiary voice center. Recorded interviews were transcribed, coded using a hierarchical coding system, and analyzed using an iterative inductive-deductive approach.
Main Outcomes and Measures
Symptom domains of the patient experience.
In 36 patients (26 [72%] were female, and the median age and interquartile range [IQR] were 63 years [48-68 years]; median interview duration, 42 minutes), median VHI and DHI scores were 96 (IQR, 77-108) and 55.5 (IQR, 35-89) at the time of interviews, respectively. Frustration, isolation, fear, and altered self-identity were primary themes permeating patients’ experiences. Frustrations related to limitations in communication, employment, and the medical system. Sources of fear included a loss of control, fear of further dysfunction or permanent disability, concern for health consequences (eg, aspiration pneumonia), and/or an inability to call for help in emergency situations. These experiences were modified by the following factors: resilience, self-efficacy, perceived sense of control, and social support systems.
Conclusions and Relevance
Effects of unilateral vocal fold paralysis extend beyond impaired voice and other somatic symptoms. Awareness of the extent to which these patients experience frustration, isolation, fear, and altered self-identity is important. A patient-centered approach to optimizing unilateral vocal fold paralysis treatment is enhanced by an understanding of both the physical dimension of this condition and how patients cope with the considerable emotional and social consequences. Recognizing the psychosocial dimensions of disease allows clinicians to communicate more effectively, be more empathetic, and to better personalize treatment plans, which may lead to improved patient care and patient satisfaction.
Unilateral vocal fold paralysis (UVFP) results from injury to one recurrent laryngeal nerve. A total of 70% to 80% of injuries are attributed to 2 causes: idiopathic (12%-37%) and surgical (47%-56%) injuries.1-3 The surgical mechanisms vary and include injury from thyroid and/or parathyroid, cardiothoracic, anterior cervical spine, head and neck, foregut, and neurosurgical procedures.1 Whether surgical or idiopathic, the paralysis is typically unexpected, of sudden onset, and associated with clinically significant functional deficits manifesting as severe communication impairment, dysphagia, aspiration,4-6 and new-onset dyspnea.7-9
The morbidity of UVFP is often prolonged owing to diagnostic and treatment delay. Years may elapse from UVFP symptom onset to diagnosis and treatment.1,2 Furthermore, while treatments are generally beneficial, they rarely return patients to their premorbid, baseline function. In one series involving 15 patients who underwent definitive framework surgery, 13 felt their voice remained abnormal and 4 ultimately required employment change.10
The ramifications of prolonged disability from UVFP are wide reaching across our most basic and constant life functions: speaking, eating, and breathing. A meta-analysis11 of studies assessing quality of life in nonneoplastic voice disorders found that patients with UVFP had 36-Item Short-Form (SF-36) subdomain scores similar to those of patients with chronic disease states (eg, asthma, acute coronary syndrome, depression). In a recent qualitative study involving 39 patients, UVFP disrupted voice, breathing, and swallowing in 100%, 76%, and 66% of participants, respectively.7 Unilateral vocal fold paralysis impairs a person’s ability to communicate at work and can result in short- and long-term disability filings12 and lead to serious morbidities, such as aspiration pneumonia.4-6 We suspect that UVFP also disrupts daily life in ways that are more difficult to measure and more poorly understood.
Understanding patient experiences promotes empathy, which helps the therapeutic relationship and may improve the quality of shared decision-making processes related to UVFP care. Evidence suggests that clinicians ineffectively capture the entirety of patient complaints owing to interview routines and time constraints.13 Thus, the aim of this qualitative study is to improve the current understanding of the morbidity of UVFP by incorporating input directly from the narratives of affected patients that can help inform shared decision making in clinical care.
This mixed-methods study was approved by the Vanderbilt University Medical Center institutional review board. The design, conduct, and reporting of this study was carried out in accordance with the COnsolidated criteria for REporting Qualitative research (COREQ) Publication Guidelines.14
Enrolled participants completed surveys to gather data on demographics (age, sex, race/ethnicity, education), insurance status, and symptoms. Participants completed the 30-Item Voice Handicap Index (VHI)15 and 25-Item Dysphagia Handicap Index (DHI)16 to quantify the degree of voice and dysphagia handicap at time of enrollment. The VHI was chosen because it is in well-known, in common use, and provides a greater range of potential scores than shorter versions. A higher score on VHI and DHI measures indicates a higher level of disability. Two team members (one of whom was K.L.H.), separately from the clinical care team, trained in semistructured interviewing techniques, conducted one-on-one phone or in-person interviews with participants. Based on a predetermined interview script, each participant was asked the same open-ended questions regarding symptoms, quality of life, and treatment followed by prompts to encourage participants to speak freely about their individual experiences and allow the interviewer to further explore themes or responses. Interviewees were asked to share their global experiences with UVFP with an emphasis on when the effects of their symptoms were worst. All interviews were audio recorded, deidentified, and transcribed verbatim using services at rev.com.
Consecutive eligible patients were prospectively identified and recruited from an outpatient tertiary care voice clinic between January and June 2016. Trained study personnel contacted and obtained written informed consent from those who agreed to participate and have their responses recorded and published. Recruitment continued until data analysis showed that thematic saturation had been reached. Patients were compensated for their participation.
To be eligible for participation, patients had to have a (1) diagnosis of UVFP confirmed by flexible laryngoscopy, (2) be 18 years or older, (3) English-speaking, (4) be willing and able to consent to be interviewed, and (5) not have a voice or swallowing disorder that was present prior to the onset of their UVFP. Participants who had experienced UVFP for differing periods were sought to capture the range of symptom severities over time.
The DHI and VHI were scored using their established scales. Qualitative data coding was managed by the staff of the Vanderbilt Qualitative Research Core, led by a PhD-level psychologist (D.S.). A hierarchical coding system was developed using the interview guide and 3 sampled transcripts. Major categories included (1) surgical outcomes, (2) physical symptoms, (3) outcomes without treatment, (4) external effects, (5) treatment, and (6) quality of life. The coding system was further expanded and refined through the constant comparative method. Major categories had from 2 to 6 categories, with each subcategory having 1 to 2 additional levels of hierarchical subdivision. Study personnel first established reliability in using the coding system, then coded the remaining transcripts. Transcripts were aggregated and sorted by code. Analysis consisted of interpreting the sorted coded quotes and identifying higher-order themes and connections between themes.
Of 39 eligible patients, 36 agreed to participate and were enrolled over a 6-month period (January-June 2016). Individuals who declined participation cited time constraints as the main barrier. Twenty-six women and 10 men with UVFP were enrolled (median age: 63 years; interquartile range [IQR], 48-68 years). The mean duration of interviews was 42 minutes (median, 33 minutes; range, 22-84 minutes). Overall, 11 patients (30%) had been diagnosed but did not require treatment (n = 8; spontaneous recovery or did not feel symptoms were sufficient to desire intervention) or had not yet been treated (n = 3; 2 awaiting injection laryngoplasty, 1 deferred treatment despite symptoms), 17 had undergone injection laryngoplasty procedures (47%), and 8 were status post–laryngeal framework surgery (22%). Patient characteristics, symptoms, UVFP etiology, and surgical interventions are shown in Table 1.
Patients described a variety of voice, swallowing, and breathing alterations of varying severity (Table 1). Voice changes were nearly universal (35 of 36 [97%]), and 26 of 36 [72%], and 21 of 36 [58%]) cited new-onset swallowing or breathing difficulties, respectively. Median VHI and DHI scores were 96 (IQR, 77-108) and 55.5 (IQR, 35-89) at the time of interviews, respectively, both of which are categorized as severe. Using Kruskal-Wallis tests, no significant differences in median VHI (P = .14) or DHI (P = .79) scores were observed between those who had not undergone surgical intervention (VHI: median, 110.5; IQR, 83-144; DHI: median, 70; IQR, 40-141) and those who had had either injection laryngoplasty (VHI: median, 88; IQR, 69-99; DHI: median, 57.5; IQR, 36-80) or framework surgery (VHI: median, 104.5; IQR, 89-116; DHI: median, 72.5; IQR, 39.5-93.0).
The effects of UVFP extended beyond physical manifestations. As one participant described, “It takes a toll on your personal life. Your feelings, your sleep, your eating, everything” (patient 31). Participants described effects on their personality, interactions with others, and perceived or actual ability to perform daily functional tasks at work, home, and in society. Four dominant themes emerged: frustration, isolation, fear, and altered self-identity (Table 2).
Participants universally reported frustration with their condition (36 of 36), describing (1) fundamental barriers with communication, (2) added challenges at work, and (3) dissatisfaction with the medical system. Patient accounts of their experiences living with UVFP underscore how the condition permeates core aspects of daily life. One patient related his burden of living with UVFP, stating, “You just don’t realize how much the voice and being able to speak clearly, and sing, and communicate with people, how much that means to your life until you’re not able to do it” (patient 20).
Patients described feeling self-conscious about their vocal quality. Moreover, they reported feeling discouraged when others struggled to understand them. One patient described this experience saying, “No one will listen” (patient 21) and “People are irritated with having to ask me to repeat myself” (patient 21). Frustration with the medical system was noted by a few patients: “[After my surgery] my voice was so bad and the doctors here did nothing” (patient 24) and “It took other doctors months of sending me to all kinds of ‘ologists’ and even they could not discern what it was” (patient 36).
Many patients found that UVFP limited their work performance. One participant mentioned, “If I needed to make a call about something, business-wise, I couldn’t, because people couldn’t hear me at the other end” (patient 36). Another felt this “had a really negative impact on my ability to communicate with clients” (patient 25).
Social isolation was a common theme across patient accounts (28 of 36 [78%]) because it offered an alternative to persistently struggling to communicate. Many reported avoiding crowds and other types of social settings and were hesitant to speak with new people because of their voice change. They shortened conversations and spent less time on the phone. The reasons for isolation varied, citing embarrassment, physical exhaustion, withdrawal, and/or depression. One participant summed up her experience: “If you can’t speak, you’re in a dark place” (patient 36). Another described her voice condition as interfering with the “pleasure of having conversation with people and being heard and understood” (patient 22).
In addition to communication barriers, participants also avoided friends and public places out of anxiety that they would be perceived as ill. One participant explained UVFP “gave me a cough that sounded like I had tuberculosis or Ebola” (patient 36). Many described being repeatedly asked if they had laryngitis or other contagious illnesses. They reported limiting social interactions because of choking during meals, difficulty with physical exercise, or general lethargy. After developing this condition, participants lamented that they could not enjoy meals as before because of the need to focus on the physical chore of eating.
Fear was prevalent among participants (21 of 36 [58%]). Sources of fear included (1) loss of control (2) fear of further dysfunction or permanent disability, (3) concern for health consequences (eg, aspiration pneumonia), and/or (4) an inability to call for help in emergency situations. Participants reported feeling out of control owing to their inability to carry out previously effortless tasks of daily life, such as voicing and swallowing. Several patients were unsure of their prognosis, feared permanently losing their voice, damaging their remaining vocal cord, or never achieving full recovery. Of the patients with UVFP that resulted from a prior surgery, a large number reported being unaware that UVFP was a potential complication during their surgery: “I just thought I was symptomatic from the surgery, but it didn't clear up. So, it got quite scary” (patient 22).
Participants were often concerned about aspiration and asphyxiation because of extreme coughing or worried they may stop breathing at night. Some were concerned that “Something was going to go into the windpipe and lungs and give me pneumonia” (patient 15). Owing to anxiety surrounding eating and drinking, many admitted losing a significant amount of weight despite the absence of a physical impediment. For example, an 11.3-kg weight loss was reported by one participant (patient 18). A number of participants were frightened about their inability to call for help in the case of emergency, both for their own personal safety as well as those they cared for, such as young grandchildren.
Altered self-identity was a higher-order theme that emerged during analysis and was derived from discussion of physical symptoms, psychological effects, and alteration of lifestyle. Participants lamented that the injury: “affected every part of my life” (patient 7) and that “I’m not like myself at all anymore” (patient 6). Self-identity is linked to a persons’ abilities and function; thus, limitations in what they were able to do required patients to make sometimes substantial adjustments to their perceived self-identity. As one patient explained, “You just don’t realize how much the voice and being able to speak clearly, and sing, and communicate with people, how much that means to your life until you’re not able to do it” (patient 20).
Participant reactions to UVFP were modified by psychological factors, social support systems, and behavioral coping approaches. Although frustration, isolation, fear, and altered self-identity were present throughout our sample, these themes were not experienced by all participants nor to the same degree. Instead, each participant’s reaction was modified based on factors that included their degrees of resilience, self-efficacy, perceived sense of control, and social support system (Table 3).
Many participants demonstrated resilience—the ability to recover from negative events by using positive emotions to cope17—despite the morbidity of their condition. Those with greater degrees of resilience expressed optimistic viewpoints, a renewed appreciation for life, and a positive effect.18 One participant’s positive affect was revealed through her reflection, “My personality doesn’t allow me to get too depressed too often” (patient 22). Others challenged themselves to counteract negative emotions and thoughts: “I try to come up with a way that I can handle it” (patient 12). One participant coped with the embarrassment of her voice disorder through preemptive humor—she “makes a joke out of it”—when interacting with others (patient 21).
Some participants expressed a high degree of self-efficacy—one’s belief in one’s ability to perform a desired behavior19—and determination to maintain their quality of life, despite the daily challenges of UVFP: “It’s not going to stop me from going places” (patient 11) and “I refused to not be around people” (patient 33). Although participants acknowledged limitations in social, occupational, and personal settings, many revealed purposeful alterations in their behavior to allow them to adapt to their condition. For example, to overcome the difficulty of communicating in a crowded venue, one participant described positioning herself next to those she wished to speak with (patient 23). Another participant turned to alternate forms of communication at work to reduce the reliance on phone calls (patient 25). Moreover, participants whose self-identity was closely tied to physical activity coped with new limitations by altering their regimens. For example, one participant described breaking her workout sessions into smaller intervals, allowing her to perform the activities that were important to her in manageable increments (patient 22).
Perceived control also moderated patient experiences. While some shared a fear of never recovering, others saw upcoming surgery as “a light at the end of tunnel” (patient 36). Others felt confident they would recover and did not dwell on the possibility of permanent disability. One participant found solace from exposure to others’ prior experiences: “I had friends who had had voice issues because of operations, so when it happened to me, it wasn’t something that I hadn’t been exposed to. That took some of the fear out of it” (patient 25).
Social support also influenced participant response to this injury. While social isolation was often adopted as a coping strategy, others found the morbidity of their condition tempered by a strong social support system. One participant explained “it’s very hard on a person unless they have a good caregiver. Someone that can listen and help them through this” (patient 31). Social support seemed to be linked to a participant’s ability to manage illness and a perceived lack of support was felt to be detrimental. For example, a participant acknowledged the benefit of her support system stating, “Otherwise I think I would be more isolated” (patient 35).
Frustration, isolation, fear, and altered self-identity are themes of the UVFP patient experience in our study, and are modified by resilience, self-efficacy, perceived control, and social support. We identified many features of the patient experience that may not typically be discussed during clinic visits. The experiential themes suggest the intimate interplay of a UVFP individual’s (1) psychology, (2) physical dysfunction, and (3) extrinsic social support and coping mechanisms.20,21
While the diagnosis of UVFP is relatively straightforward with a laryngoscopic examination, a full understanding of the disease burden on the patient population, capturing both the physical symptoms and their psychosocial effects, is lacking. Based on this study’s findings, it seems that the severity of impact on a patient’s quality of life is perhaps more dependent on psychosocial factors than the degree of physiological dysfunction. This is notable because clinicians are traditionally well trained to handle the biomedical component of disease but may be less equipped to manage the psychological, social, and cultural dimensions of illness.22 Efforts are now being made to better measure the effect of dysphonia on psychosocial constructs.23 However, further research is needed on specific psychosocial impacts of UVFP and the interplay with the consequent somatic manifestations (eg, voice, swallowing, breathing).
Psychosocial consequences of UVFP may be exacerbated by delay in diagnosis and treatment. Unfortunately, delayed diagnosis and treatment are common, and patients may experience symptoms and sequelae for weeks to years before presenting,1,2 which can have a dramatic effect on their outlook on life. Even after presenting, time constraints and practice patterns make it difficult for clinicians to prioritize discussion of the psychosocial morbidity of UVFP during clinic visits. By highlighting core themes derived directly from affected patients, we hope to help guide a focused dialogue for patient education that may help to improve the quality of decision-making by taking into account not just the physical limitations inherent to UVFP but also the psychosocial morbidity.
First, this was primarily a qualitative research study. Qualitative methods have an advantage over quantitative approaches when the goal is to explore and describe specific phenomena and experiences. Results from studies using these methods are the basis from which new models, ideas, and hypotheses emerge, which may be tested and validated using quantitative approaches in subsequent studies.
Second, participants were relatively homogenous (mostly white, female, well-educated) and from a tertiary care setting in the southeastern United States. Thus, some of the specific patient experiences described in this study (eg, singing as a primary impairment to quality of life in Nashville, Tennessee) may reflect sociocultural dimensions of this region. Finally, recruitment was from a single tertiary voice center, which may have resulted in enrolling participants with more severe UVFP-related morbidity (eg, high VHI and DHI scores) and a high number who had failed prior treatment (eg, laryngoplasty) or had been ineffectually rehabilitated. These severe cases are frequently seen in this clinic, and these participants were perhaps eager to share their experiences. However, the themes expressed are likely to be generalizable because the major domains of the results were robust and aligned with the physical disabilities described.
The effect of UVFP extends well beyond physiological and somatic symptoms. Frustration, isolation, fear, and altered self-identity are modified by intrinsic and extrinsic factors, such as resilience and social support. A patient-centered approach to optimizing UVFP management is enhanced by an understanding of both the physical dimension of this condition and how patients cope with the significant emotional and social consequences. Recognizing the psychosocial dimensions of disease allows clinicians to communicate more effectively, be more empathetic, and to better personalize treatment plans, which may lead to improved patient care and patient satisfaction.
Corresponding Author: David O. Francis, MD, MS, Division of Otolaryngology, Department of Surgery, 600 Highland Ave K4/7, Madison, WI 53792-7375 (email@example.com).
Accepted for Publication: January 28, 2018.
Published Online: April 5, 2018. doi:10.1001/jamaoto.2018.0067
Author Contributions: Dr Francis had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Francis, Hovis, Schlundt, Garrett.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Francis, Sherman, Bonnet.
Critical revision of the manuscript for important intellectual content: Francis, Hovis, Schlundt, Garrett, Davies.
Statistical analysis: Francis, Bonnet, Schlundt.
Obtained funding: Francis.
Administrative, technical, or material support: Francis, Sherman, Hovis, Bonnet, Garrett.
Study supervision: Francis, Garrett.
Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest, and none were reported.
Funding/Support: This study was supported by grants K23DC013559 and L30DC012687 from the National Institute for Deafness and Communication Disorders of the National Institute of Health. Dr Davies is supported by the Department of Veterans Affairs.
Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Disclaimer: The views expressed do not necessarily represent the views of the Department of Veterans Affairs or the United States Government.
Additional Contributions: We acknowledge the valuable contributions of all those involved in the study who made this article possible. We thank Tiffany Israel, MSW, and Kate VonWahlde, MA, at Vanderbilt University, Allen C. Sherman, PhD, University of Arkansas, and the wonderfully generous patients, laryngologists, and speech-language pathologists who shared their time to participate in this study. Patients were compensated for their participation; the others were not.
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