Life Experience of Patients With Unilateral Vocal Fold Paralysis

Key Points

Question

What is it like to live with unilateral vocal fold paralysis from the patients’ perspective?

Findings

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.

Meaning

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.

Abstract

Importance

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.

Objective

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.

Results

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.

This mixed methods study (surveys and interviews) promotes patient-centered care by characterizing the patient experiences of living with unilateral vocal fold paralysis.

Introduction

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.^1,2,3 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,^4,5,6 and new-onset dyspnea.^7,8,9

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.^4,5,6 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.

Methods

Study Design and Procedures

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.

Recruitment, Inclusion, and Exclusion Criteria

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.

Statistical Analysis

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.

Results

Patients

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.

Table 1. Characteristics of Patients With Unilateral Vocal Fold Paralysis Who Were Interviewed.

Variable	No. (%)
Age, median (IQR), y	63 (48-68)
Female	26 (72)
White	32 (89)
Education
Some high school	5 (6)
High school	7 (19)
Some college	9 (25)
College	13 (36)
Graduate school	51 (4)
Insurance
Medicare	20 (55)
Medicaid	12 (33)
Private	3 (9)
Military	1 (3)
Currently employed	16 (44)
Daily voice use, median (IQR), h	5 (4-9)
Etiology surgery	24 (66)
Idiopathic	9 (26)
Tumor	3 (8)
Symptoms to clinic visit, median (IQR), mo	4.5 (2-16)
Type of symptom
Dysphonia	35 (97)
Dysphagia	26 (72)
Saliva	8 (22)
Liquids	18 (50)
Pureed	5 (14)
Solids	15 (42)
Dry	19 (53)
Dyspnea	21 (58)
Cough	31 (86)
Surgical treatment	28 (78)
Injection laryngoplasty	25 (68)
Framework surgery	11 (32)

Abbreviation: IQR, interquartile range.

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).

Experiential Themes

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).

Table 2. Experiential Themes—Representative Quotes From Semistructured Interviews.

Themes	Subtheme	Comment
Frustration
	Communication	“The most frustrating part would be the not being able to communicate like I was normally able to do” (patient 17). “Everybody after a while gets a little impatient when you can’t even get your thoughts out or answer questions” (patient 9).
	Employment	“I couldn’t do my job because I was on the phone a whole lot and people couldn’t understand what I was saying” (patient 19). “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).
	Medical system	“I was just frustrated because why did it have to happen, because it was just so out of the blue, and nobody could figure it out” (patient 14). “It took other doctors months of sending me to all kinds of ‘ologists,’ and even they could not discern what it was” (patient 36).
Fear
	Emergency	“My grandkids, if I have to holler out their names because I’m afraid that they’re going to do something that hurts them, then I can’t do that. I can’t holler. I can’t raise my voice. Plus, if something happened to me, if I was in danger, I can’t yell for help” (patient 8). “I worry I could be out and something happens, and I could holler for help and no one would hear me” (patient 11).
	Health consequences	“I was afraid that some pieces was going into my lungs and give me pneumonia. That was probably one of the scariest thing” (patient 15). “What’s scary is the choking and the breathing” (patient 12).
	Permanent/further damage	“The thing I feared most was that I would never get better” (patient 33). “I have just an ongoing fear of losing further control of my voice” (patient 23).
	Loss of control	“When I was drinking, I would have to think more…I was actually thinking about swallowing” (patient 17). “I just thought I was symptomatic from the surgery but it didn't clear up. So, it got quite scary” (patient 22).
Isolation	NA	“I don’t go out as much because I don’t want to be in a situation where someone’s trying to have a conversation with me and they can’t” (patient 6). “Now I stay home, I avoid the phone, I avoid situations where I need to talk” (patient 5).
Altered self-identity	NA	“This whole thing has just really taken apart my identity and given the pieces away, so I just don’t have them anymore” (patient 6). “It’s frustrating to me that something that was entirely not my fault at all could totally change my entire life, perception of myself…I can’t really do much of anything the same anymore because I either don’t sound the same, I can’t breathe the same, I don’t feel the same” (patient 6).

Abbreviation: NA, not applicable.

Frustration

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

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

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

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).

Experiential Modifiers

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).

Table 3. Experiential Modifiers—Representative Quotes From Semistructured Interviews.

Modifiers	Category	Comment
Emotion	Affect	“I try not to let stuff get me down. I tried just to continue what I normally would because you just never know the next if we’re going to alive, so I try not to let any pain or anything stop me” (patient 14). “I just had a positive attitude about I was going to get better. My personality doesn’t allow me to get too depressed too often“ (patient 22).
Cognition
	Resilience	“I’m just thankful today that I’m still able to take showers and drive a car. I don’t think it’s really damaged my quality of life” (patient 12). “It never really affected the quality of life. I mean, I didn’t let it bother me” (patient 16).
	Perceived sense of control	“Knowing that I had this surgery planned to fix it, at least that gave me a light at the end of the tunnel” (patient 36). “I never felt like there wasn’t an answer. I didn’t dwell on that” (patient 25).
	Self-efficacy	“Instead of getting frustrated or moody or down, I try to come up with a way that I can handle it” (patient 12). “If I can’t talk to people so people can hear me, can understand me, I just don’t talk to them very much but I sure didn’t stop doing things because of my voice” (patient 24).
Behavioral coping
	Social	“Slight improvement [in social situations], but I attribute that to just determined for more relaxation techniques when I am having conversations with people” (patient 23). “If I was in a crowded room and I wanted to talk to somebody that was 3 people away, I would try to be next to them and just have to move where I knew that they could normally hear me for a few minutes at a time” (patient 23).
	Work	“It just got to the point where you would just give up at some point in the conversation, or just try to find another way around it which is not efficient” (patient 25). “In professional work setting or a teaching setting, it was bit of an extra effort for me to preplan what I was going to say and what breaks I would make in the conversation” (patient 23).
	Personal	“Whenever I do my cardio, I don’t have near the stamina that I used to have. So now, I have 10-minute intervals of exercise” (patient 22). “I had to learn how to manage my chewing and swallowing so that I wouldn’t get choked” (patient 22). “Setting my daily routine…starting with those relaxation techniques and then making a conscious effort, at least twice a day, to regroup and think about whatever my projects are for that day” (patient 23).
Social support	NA	“I’ve got a core of good people around me that will listen to me no matter what and make an effort” (patient 21). “If my friends and coworkers weren’t so understanding and helpful I think I would be a lot more isolated…Otherwise I think I would be more isolated and avoid going out as much” (patient 35).

Abbreviation: NA, not applicable.

Resilience

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).

Self-efficacy

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

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

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).

Discussion

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.

Limitations

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.

Conclusions

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.