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J Neurol Surg B Skull Base
DOI: 10.1055/a-2446-9674
Original Article

A Survey of 251 Facial Paralysis Patients to Assess Their Educational Preparedness and Symptom Management after Treatment of Vestibular Schwannoma

Garni Barkhoudarian
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
,
Walavan Sivakumar
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
,
Courtney J. Voelker
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
,
Shanthi Gowrinathan
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
,
Akanksha Sharma
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
,
Hsin-Fang Li
2   Center for Outcomes Research and Education, Providence St. Joseph Health, Portland, Oregon, United States
,
Amit Kochhar 
1   Saint John's Cancer Institute, Pacific Neuroscience Institute, Providence St. John's Medical Center, Santa Monica, California, United States
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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.

Keywords

vestibular schwannoma - facial paralysis - patient education - anxiety - gaps in care - survey study


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
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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