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DOI: 10.1055/a-2446-9674
A Survey of 251 Facial Paralysis Patients to Assess Their Educational Preparedness and Symptom Management after Treatment of Vestibular Schwannoma
Abstract
Objective The aim of this study was to evaluate how patients with vestibular schwannoma (VS) were prepared for facial paralysis (FP).
Study Design This study comprised an online survey of members of the Acoustic Neuroma Association of America who had FP.
Methods A 28-question survey gathering information on the patient experience related to management of FP was created. Associations between treatment setting and presence of FP were analyzed using SAS Enterprise Guide 8.4. Significance was considered at p-values < 0.05 in a univariate and multivariable model.
Results A total of 251 subjects with VS and FP responded. A total of 14% presented with FP, 70% were diagnosed with VS at least 6 months prior to treatment, and 61% were treated at academic centers. A total of 28% felt prepared for life with FP and 42% were confident their medical team understood management. Less than 30% of respondents received educational materials. After developing FP, speech and swallow difficulty and anxiety were common, but few respondents were referred for expert management. Subjects at academic centers were more often referred to specialists in the same location. Those with preoperative FP felt their medical teams better prepared them for it, had fewer complaints of difficulty speaking, and were happier with their recovery.
Conclusion Significant gaps in preparation and management of FP were identified. Preoperative FP led to improved perception of care; however, the delivery was similar to those without it. Studies of surgeons who manage VS are needed to better understand how they prepare patients for the emotional and physical sequelae of FP.
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Keywords
vestibular schwannoma - facial paralysis - patient education - anxiety - gaps in care - survey studyIntroduction
Vestibular schwannomas (VS) are benign, typically slow-growing tumors, with an incidence of 1 per 100,000 persons per year.[1] Management options vary depending on size and location and include surveillance, stereotactic radiation therapy, or microsurgical resection.[2] [3] Facial paralysis (FP) is one of the most critical side effects one may experience from the treatment of VS, with an incidence of 16 to 25% postoperatively.[4] [5] [6] [7] [8] [9] [10] [11] [12] [13] [14] [15] [16] [17] [18] [19] [20] FP is a highly visible, appearance-altering condition that can impair ones' ability to express emotion, communicate, swallow, and protect the cornea. If partial or incomplete recovery occurs, synkinesis may result leading to gross asymmetry at rest and involuntary facial contractions during volitional expression.[21]
The physical and emotional side effects of FP are well documented and known to be associated with reduced social involvement, psychological well-being, and poorer quality of life.[15] [16] [17] [18] [19] [20] [21] [22] [23] Three recent studies employed semi-structured interviews to evaluate and categorize the experiences of patients with FP in their own words.[24] [25] [26] These authors highlighted several common themes on how a patient with FP experiences distress. These themes were the burden of managing a chronic condition, altered/negative self-perception, social anxiety, and a tendency toward self-isolation.[24] [25] [26] Two of the studies noted poor coordination of health care after development of FP. At least one subject in each study described a sense of abandonment from their caregivers that led to an endless and often fruitless pursuit to gain control over FP by experimenting with their own treatments.[25] [26] All three studies agreed that patients with FP suffer from a health care system with significant educational gaps, poor clinical care coordination, and a failure on the part of health care providers to address emotional needs of these patients.[24] [25] [26]
While the above studies offer a glimpse into the FP patient experience after diagnosis, none examine the relationship that patients have with their VS surgeons before development of FP or how they received care for its sequelae. Furthermore, we are not aware of any studies that have evaluated if preoperative FP status leads to different educational and management experiences. Lastly, as we move toward a more systems-oriented approach, we aim to find out if there are differences in educational preparedness and management of FP based on the treatment setting (academic medical center vs. private practice). The objectives of the current study are: (1) to evaluate how well VS patients received education for FP; (2) to assess how well ancillary care for side effects of FP was offered/provided; and (3) to assess whether either the diagnosis of preoperative FP or the treatment location affected delivery of care.
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Methods
Ethical approval was obtained from the Providence Saint Joseph Health (PSJH) Institutional Review Board (STUDY2021000624). Participants were recruited from the Acoustic Neuroma Association (ANA) between January 2023 and May 2023.
Participants
An online recruitment was conducted with permission of the ANA. Participants aged 18 years and older were recruited. Recruitment targeted individuals who experienced FP prior to or after surgical treatment for VS. On January 9, 2023, an email invitation to complete a survey was sent to 7,105 ANA contacts. The survey remained open for 4 months and was closed on May 9, 2023. By completing the survey, participants were informed that they provided consent to allow responses to be used anonymously in research.
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Survey
A 28-question survey ([Table 1]) intended to gather information on the pre- and postoperative experience related to management of FP was created by the senior author and colleagues (A.K., G.B., C.J.V., W.S., S.G.). The survey was stored and managed using the Research Electronic Data Capture tool (REDCap) hosted at PSJH.[27] Survey questions specifically addressed the education participants received prior to, and following, surgery for VS. Questions were also asked about FP-related side effects, management of FP, and the respondents' perceptions about the care they received from their VS surgeons.
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Statistical Analysis
Survey responses were summarized using frequencies and percentages and were consolidated into two categories when appropriate: Agree (including agree and strongly agree) and Disagree (including disagree and strongly disagree). Neutral responses were also included; however, those with no response were excluded from the analysis to focus on participants' more definitive opinions and for the ease of interpretation. The responses were compared for all respondents and between patients with and without FP prior to surgery using Pearson's chi-square or Fisher's exact test, where appropriate. Some Likert scale survey responses were dichotomized for the ease of interpretation. Proportions of survey responses within groups were compared using one sample proportion Z-tests. All analyses were conducted using SAS Enterprise Guide 8.4. Significance was considered at p-values < 0.05.
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Results
Survey Distribution and Completion
A total of 7,105 ANA members were contacted by email to participate in the online survey specifically targeting those with a history of FP before or after surgery for VS. A total of 6,676 successful survey deliveries were made. A total of 3,904 ANA members viewed the invitation and 511 opened the survey link. A total of 251 respondents with VS and FP completed the survey. [Tables 2] and [3] reflect responses based on treatment location and preoperative FP status, respectively. The values in the table reflect the number of available responses.
Descriptive statistics in this table are represented as n (%). P-values were calculated using either Fisher's exact test or Pearson's chi-square test.
a n (%).
b Fisher's exact test; Pearson's chi-squared test.
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Respondent Characteristics
A total of 70% of all respondents were diagnosed with VS less than 6 months prior to treatment. A total of 61% underwent treatment at academic medical centers. A total of 86% did not develop FP until after surgery. Among patients with postoperative FP, 79% developed it immediately after surgery, and an additional 14% within 2 weeks. The rates of immediate postoperative FP were similar for both the academic and private practice treatment setting (76 vs. 75%).
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Education and Preparedness for Facial Paralysis
A total of 83% of all respondents reported discussing the risk of FP with their surgeons prior to surgery. A total of 10% were unsure about having this discussion and 7% stated they did not discuss the risk of FP prior to surgery. Only 22% of all respondents received educational resources for FP before surgery and this result was similar for both academic (20%) and private practice settings (24%). A higher percentage of patients with preoperative FP (29%) noted receiving educational materials before surgery compared with non-FP patients (19%), although the difference did not reach statistical significance (p = 0.169). After surgery, only 30% of all respondents received educational materials. Similar rates were noted for academic and private practice settings (30 vs. 35%); however, when assessing this on FP status, preoperative FP patients were more likely to receive educational materials than those without FP prior to surgery (44 vs. 28%, p = 0.057).
When educational materials were provided, nearly half (45%) of all respondents found them to be helpful while 24% disagreed and 30% were unsure. Preoperative FP status was not associated with the agreement of this sentiment (preoperative FP 47% vs. no preoperative FP 45%). Patients receiving treatment at academic centers found the educational material more helpful than those receiving treatment in private practice (59 vs. 31%, p = 0.045).
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Facial Reanimation
A total of 17% of respondents noted that recovery of facial function took longer than 12 months and 40% noted no recovery at all. A total of 25% of respondents received a referral to a reconstructive surgeon after development of FP and only 17% of all respondents underwent facial reanimation surgery. Similar results were noted, regardless of the treatment setting (academic vs. private) or preoperative FP status.
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The Effect of Facial Paralysis on Speech and Swallow
After developing FP, 44% of respondents noted difficulty speaking. Significantly more of those with preoperative FP complained of this sequela compared with those without preoperative FP (63 vs. 41%, p = 0.015). Complaints of difficulty speaking were no different at academic or private practice settings (46 vs. 42%). Difficulty eating was endorsed by 62% of all respondents after development of FP. Similar responses were noted, regardless of treatment setting or preoperative FP status.
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Evaluation and Management of Speech and Swallow Related to Facial Paralysis
A total of 41% of those who responded “yes” to having difficulty speaking were referred to specialists for speech and language therapy (SLP). A total of 50% of respondents with preoperative FP who responded “yes” to having difficulties with speech were referred to specialists, whereas only 39% of those without preoperative FP were referred (p = 0.332). A total of 22% of all respondents who responded “yes” to having difficulty eating were referred to a specialist for SLP. Treatment setting and preoperative FP status did not affect this referral pattern.
Over half of the respondents (55%) noted that the specialists they were referred to manage their FP were in the same hospital as their neurosurgeon/neurotologist. Presence of preoperative FP did not affect this result. However, those treated at academic centers were more frequently referred to specialists in the same hospital than those treated in private practice (64 vs. 46%, p = 0.03).
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Evaluation and Management of the Emotional Sequelae and Quality of Life Changes Related to Facial Paralysis
A total of 24% of all respondents stated that their VS surgeons performed quality of life assessments for FP. A total of 69% noted experiencing feelings of anxiety at least once a week after development of FP; however, only 7% of all respondents were referred to experts in psychiatry or psychology after developing FP. No difference was found in either treatment setting or based on preoperative FP status.
A total of 32% of all respondents were informed of support groups to help them cope with their FP. The majority (81%) learned about them from providers other than their VS surgeons. A total of 25% of all respondents took part in these support groups. Of those who did, 62% agreed that they were helpful, 10% disagreed, and 28% were unsure of their utility. A higher percentage of those treated at academic centers agreed that support groups were helpful compared with those treated in the private practice setting (71 vs. 50%, p = 0.276).
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Sentiment Regarding Education and Treatment Experience for Facial Paralysis
A series of questions was asked to assess the patient's sentiment about the care they received. These questions all began with: “How much do you agree with the following statement?”
A total of 28% of all respondents agreed with the statement that “my surgeon/team adequately prepared me for life with FP” 45% disagreed and 27% were unsure. Similar agreement was noted by patients treated in either academic or private practice. Those with preoperative FP were significantly more likely to agree compared with those who did not have FP before surgery (56 vs. 24%, p = 0.001).
A total of 42% of all respondents agreed with the following statement, “I am confident that my surgeon/team understood how to properly manage FP.” A total of 28% disagreed and 29% were unsure. A total of 51% of those treated at academic centers agreed with this statement compared with only 36% in private practice (p = 0.063). Disagreement was similar in both treatment settings (25% academic vs. 31% private). A total of 57% of those with preoperative FP agreed with this statement compared with 40% without preoperative FP (p = 0.073).
When asked if “my treatment team seemed interested in improving my physical health,” 63% of respondents agreed, 17% disagreed, and 20% were unsure. When asked if “my treatment team seemed interested in improving my emotional health,” only 32% of respondents agreed, 31% disagreed and 37% were unsure. Similar agreement was noted for those with and without preoperative FP and for each treatment setting.
A total of 41% of all respondents agreed with the statement, “I am happy with the amount of facial nerve recovery I have had since treatment.” A total of 35% disagreed with this sentiment and 24% were unsure. Those with preoperative FP were significantly more likely to agree with the statement than those without preoperative FP (62 vs. 37%, p = 0.024). No significant difference was noted for responses based on treatment setting (38% academic vs. 50% private, p = 0.120).
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Discussion
The development of FP is one of the most challenging complications following treatment for VS. Informed consent that includes the risks and complications of a surgical intervention is an essential component of preparation for treatment. The majority of respondents noted that facial nerve injury was discussed as a surgical complication; however, our data suggest that patients were still not well prepared for such a critical side effect. This was possibly a result of the lack of educational materials provided. A minority of respondents (∼20%) stated that they received educational materials about FP and only 28% of those surveyed felt that their surgeon adequately prepared them for life with FP. Furthermore, only 42% of respondents were confident that their surgeon understood how to properly manage FP.
Improved surgical preparedness is a relatively cost-effective process and can be performed with modest interventions. Simple tools such as educational handouts, online presentations/modules, and even preoperative telephone calls to review the risks of surgery have been shown to be cost-effective and improve patient preparedness and satisfaction.[28] A more systematic approach was done by Kenton et al in women undergoing complex pelvic floor reconstruction.[29] After receiving informed consent, a questionnaire assessing knowledge and readiness for surgery was performed. They found that patient satisfaction, symptom improvement, and quality of life were strongly associated with patients' expectations and surgical preparedness.[29]
While a majority of those surveyed in the current study felt confident that their treatment teams were interested in managing their physical symptoms related to FP, our data contradict this. Regardless of treatment location or preoperative FP status, there was a very low rate of specialist referral for functional (speech/swallow disturbance) side effects compared with the high proportion of respondents complaining of them. One reasonable possibility for this is that patients may not have told their VS surgeons about speech and swallow issues; however, it also possible that VS surgeons may not have asked about these side effects. Several studies have shown that speech and swallow are commonly affected by FP whether it is flaccid or nonflaccid in nature and can have a detrimental effect on communication and quality of life.[30] [31] [32] Thus, VS surgeons should consider obtaining an objective assessment of speech and swallow function as a routine part of their postoperative protocol.
The rates of referrals by VS surgeons to facial reconstructive specialists was also very low (25%). While it is possible that many of those surveyed had nonflaccid FP that is typically managed nonsurgically, 17% of respondents were paralyzed for more than 1 year and 40% stated that they did not regain function at all. Multiple studies have demonstrated that patients with complete FP (rated as House Brackman 6/6), have improved outcomes with intervention at 6 months rather than waiting the more traditional 12 to 18 months.[33] [34] The high rate of prolonged and unresolved FP in this population should have led to a higher rate of referrals to reconstructive surgery.
Patients with FP related to VS are not routinely undergoing quality of life assessments nor was emotional health in these patients addressed. Only 25% of those surveyed completed surveys related to their quality of life, 70% responded experiencing anxiety at least once a week and only 7% of respondents were referred to specialists who manage psychological issues. Not surprisingly, only one-third of those surveyed responded feeling confident their treatment team was interested in improving their emotional health. Lastly, the vast majority of those who were notified about support groups for FP (82%) learned about them from providers other than their VS surgeons (ANA, Friends/Family, Reconstructive surgeon).
Psychological intervention is an important but often overlooked component in the treatment of FP.[33] Patients with moderate or severe facial impairment exhibit a higher degree of social impairment, poorer health valuation, and a reduced quality of life.[35] [36] [37] [38] The duration that one experiences paralysis is also closely associated with higher degrees of depression. Both subclinical depression and anxiety have been correlated to a significant reduction in quality of life in those with FP.[39] Clinicians with knowledge and awareness of the psychological issues associated with FP are more prepared to ask how a patient feels or inquire about any psychological symptoms, resulting in a more holistic care plan. VS surgeons are present at the time of FP onset and should therefore understand the psychological aspects of the condition and provide empathetic support for this population that is particularly vulnerable to psychological difficulties.[40] Performing routine surveillance with quality of life or depression screening and prompt referral to specialists in psychology/psychiatry should be widely utilized in this population.
Interestingly, our data suggest that treatment location and preoperative FP status does not affect one's preparedness or referral pattern for management of FP. Except for the perception of more helpful educational materials and closer proximity to specialists provided at academic medical centers, both treatment settings failed to adequately manage the functional and emotional sequelae for these patients.
This research has focused on the patient experience. Further work must be done to investigate the perceptions and intentions of surgeons who manage VS so that we can more fully understand their perspectives on the management of the physical and emotional side effects of FP. By comparing patient and surgeon responses, we can better identify gaps in communication/care and may be able to identify the most effective interventions to improve health care delivery.
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Conclusion
This is the first large survey study to evaluate the educational and treatment experiences of patients with VS who developed FP. While not every patient experiences this critical side effect, it is obvious those who do experience significant side effects and there are simple, cost-effective ways to improve outcomes. The successful management of FP requires attention to both physical and emotional side effects. Surgeons seemed to address the physical side effects more often than the emotional impact; however, respondents lacked confidence in the care they received. This sentiment was noted, regardless of the treatment setting or preoperative FP status. To effectively improve the management of FP, surgeons who manage VS should incorporate a more systematic approach to address its complex side effects. This should include methods for improved education about its side effects, and when necessary, screening and early referral to specialists who can assist in their care and rehabilitation.
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Limitations
The retrospective nature of this survey study suggests that recall bias may be present in the respondents. Response rate was also low at 3.5%; however, the authors do not know how many ANA members who received the email request had a history of FP with VS as the ANA email listserv includes members with VS as well as friends and family members of those with VS. Demographic information such as age, sex, or educational status were not reported and their influence on the patient experience was not assessed. Lastly, clinical information such as severity of FP was not recorded, and the majority of respondents were diagnosed with VS within 6 months of treatment. This treatment paradigm differs from the authors treatment paradigm and may indicate the tumors were larger/more symptomatic necessitating surgical resection rather than observation. Since we did not poll those with VS who did not undergo surgery, we are unable to comment on the educational experience of these patients and preparedness for development of FP.
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Conflict of Interest
None declared.
Acknowledgments
We are grateful to the Acoustic Neuroma Association and the subjects who completed this survey.
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References
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- 2 Gal TJ, Shinn J, Huang B. Current epidemiology and management trends in acoustic neuroma. Otolaryngol Head Neck Surg 2010; 142 (05) 677-681
- 3 Tan M, Myrie OA, Lin FR. et al. Trends in the management of vestibular schwannomas at Johns Hopkins 1997-2007. Laryngoscope 2010; 120 (01) 144-149
- 4 Bateman N, Nikolopoulos TP, Robinson K, O'Donoghue GM. Impairments, disabilities, and handicaps after acoustic neuroma surgery. Clin Otolaryngol Allied Sci 2000; 25 (01) 62-65
- 5 da Cruz MJ, Moffat DA, Hardy DG. Postoperative quality of life in vestibular schwannoma patients measured by the SF36 Health Questionnaire. Laryngoscope 2000; 110 (01) 151-155
- 6 Hardy DG, Macfarlane R, Baguley D, Moffat DA. Surgery for acoustic neurinoma. An analysis of 100 translabyrinthine operations. J Neurosurg 1989; 71 (06) 799-804
- 7 Jørgensen BG, Pedersen CB. Acoustic neuroma. Follow-up of 78 patients. Clin Otolaryngol Allied Sci 1994; 19 (06) 478-484
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- 19 Ryzenman JM, Pensak ML, Tew Jr JM. Patient perception of comorbid conditions after acoustic neuroma management: survey results from the acoustic neuroma association. Laryngoscope 2004; 114 (05) 814-820
- 20 Carlstrom LP, Copeland III WR, Neff BA, Castner ML, Driscoll CL, Link MJ. Incidence and risk factors of delayed facial palsy after vestibular schwannoma resection. Neurosurgery 2016; 78 (02) 251-255
- 21 Kim J, Lee HR, Jeong JH, Lee WS. Features of facial asymmetry following incomplete recovery from facial paralysis. Yonsei Med J 2010; 51 (06) 943-948
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- 36 Pouwels S, Sanches EE, Chaiet SR. et al. Association between duration of peripheral facial palsy, severity, and age of the patient, and psychological distress. J Plast Reconstr Aesthet Surg 2021; 74 (11) 3048-3054
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Address for correspondence
Publication History
Received: 31 August 2024
Accepted: 18 October 2024
Article published online:
11 December 2024
© 2024. Thieme. All rights reserved.
Georg Thieme Verlag KG
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References
- 1 Acoustic neuroma. Consent Statement 1991; 9 (04) 1-24
- 2 Gal TJ, Shinn J, Huang B. Current epidemiology and management trends in acoustic neuroma. Otolaryngol Head Neck Surg 2010; 142 (05) 677-681
- 3 Tan M, Myrie OA, Lin FR. et al. Trends in the management of vestibular schwannomas at Johns Hopkins 1997-2007. Laryngoscope 2010; 120 (01) 144-149
- 4 Bateman N, Nikolopoulos TP, Robinson K, O'Donoghue GM. Impairments, disabilities, and handicaps after acoustic neuroma surgery. Clin Otolaryngol Allied Sci 2000; 25 (01) 62-65
- 5 da Cruz MJ, Moffat DA, Hardy DG. Postoperative quality of life in vestibular schwannoma patients measured by the SF36 Health Questionnaire. Laryngoscope 2000; 110 (01) 151-155
- 6 Hardy DG, Macfarlane R, Baguley D, Moffat DA. Surgery for acoustic neurinoma. An analysis of 100 translabyrinthine operations. J Neurosurg 1989; 71 (06) 799-804
- 7 Jørgensen BG, Pedersen CB. Acoustic neuroma. Follow-up of 78 patients. Clin Otolaryngol Allied Sci 1994; 19 (06) 478-484
- 8 Lohne V, Bjørnsborg E, Westerby R, Heiberg E. Effects of facial paralysis after acoustic neuroma surgery in Norway. J Neurosci Nurs 1987; 19 (03) 123-131
- 9 Magliulo G, Zardo F, Damico R, Varacalli S, Forino M. Acoustic neuroma: postoperative quality of life. J Otolaryngol 2000; 29 (06) 344-347
- 10 Martin HC, Sethi J, Lang D, Neil-Dwyer G, Lutman ME, Yardley L. Patient-assessed outcomes after excision of acoustic neuroma: postoperative symptoms and quality of life. J Neurosurg 2001; 94 (02) 211-216
- 11 Nikolopoulos TP, Johnson I, O'Donoghue GM. Quality of life after acoustic neuroma surgery. Laryngoscope 1998; 108 (09) 1382-1385
- 12 Samii M, Matthies C. Management of 1000 vestibular schwannomas: surgical management and results with an emphasis on complications and how to avoid them. Neurosurgery 1997; 40 (04) 684-694
- 13 Schwartz MS, Riddle SA, Delashaw Jr JB, Horgan MA, Kellogg JX, McMenomey SO. Quality of life following acoustic neuroma surgery. Neurosurg Focus 1998; 5 (03) e3
- 14 Brackmann DE, Arriaga MA. Extra-axial neoplasms of the posterior fossa. In: Cummings CW, Fredrickson JM, Harker LA. eds. et al. Otolaryngology Head and Neck Surgery. Vol 4. St Louis, Mo: Mosby–Year Book Inc; 1998: 3294-3330
- 15 VanSwearingen JM, Cohn JF, Turnbull J, Mrzai T, Johnson P. Psychological distress: linking impairment with disability in facial neuromotor disorders. Otolaryngol Head Neck Surg 1998; 118 (06) 790-796
- 16 Cross T, Sheard CE, Garrud P, Nikolopoulos TP, O'Donoghue GM. Impact of facial paralysis on patients with acoustic neuroma. Laryngoscope 2000; 110 (09) 1539-1542
- 17 Coulson SE, O'dwyer NJ, Adams RD, Croxson GR. Expression of emotion and quality of life after facial nerve paralysis. Otol Neurotol 2004; 25 (06) 1014-1019
- 18 Volk GF, Granitzka T, Kreysa H, Klingner CM, Guntinas-Lichius O. Initial severity of motor and non-motor disabilities in patients with facial palsy: an assessment using patient-reported outcome measures. Eur Arch Otorhinolaryngol 2017; 274 (01) 45-52
- 19 Ryzenman JM, Pensak ML, Tew Jr JM. Patient perception of comorbid conditions after acoustic neuroma management: survey results from the acoustic neuroma association. Laryngoscope 2004; 114 (05) 814-820
- 20 Carlstrom LP, Copeland III WR, Neff BA, Castner ML, Driscoll CL, Link MJ. Incidence and risk factors of delayed facial palsy after vestibular schwannoma resection. Neurosurgery 2016; 78 (02) 251-255
- 21 Kim J, Lee HR, Jeong JH, Lee WS. Features of facial asymmetry following incomplete recovery from facial paralysis. Yonsei Med J 2010; 51 (06) 943-948
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