RESUMO
BACKGROUND: Vestibular schwannomas (VSs) are benign tumors of the vestibulocochlear nerve that often cause significant neurological and functional impairment. Patient-reported outcomes, including quality of life (QoL), are essential for understanding the overall impact of VS and its treatment. This study aimed to translate and culturally adapt the Vestibular Schwannoma Quality of Life (VSQOL) Index into German to expand its relevance to German-speaking populations. METHODS: We used a qualitative approach including translation and cognitive interviews with 10 patients who underwent VS surgery. The translation process followed the TRAPD protocol to ensure linguistic and conceptual accuracy. Cognitive interviews assessed the comprehensibility and relevance of the translated questionnaire. RESULTS: The translation showed remarkable consistency between translators, with minor discrepancies resolved by consensus. Cognitive interviews provided valuable insights that led to refinements in item wording. Participants emphasized the importance of an additional item on physician referrals, reflecting differences in health care systems between the United States and Germany. CONCLUSIONS: The German VSQOL provides a comprehensive tool for assessing QoL in patients with VS that integrates patient-centered dimensions. A Validation study is underway to establish its reliability and validity.
Assuntos
Comparação Transcultural , Neuroma Acústico , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Neuroma Acústico/psicologia , Neuroma Acústico/cirurgia , Feminino , Masculino , Alemanha , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Medidas de Resultados Relatados pelo Paciente , Idoso , Reprodutibilidade dos Testes , Traduções , Psicometria/métodos , Psicometria/instrumentação , TraduçãoRESUMO
People diagnosed with Vestibular Schwannoma (VS) can experience several symptoms both pre and post-treatment. These, alongside the diagnosis experience, can significantly impact their daily life. The present research is a continuation of a larger study aiming to explore the impacts of symptomology and body image/fear of negative evaluation (FNAE) on the quality of life (QOL) for people with VS. The research design was exploratory and involved a nationwide survey with a total of 52 participants. FNAE was assessed using a measurement of the same name, and QOL was assessed using the Penn Acoustic Neuroma Quality of Life scale (PANQOL). Comparing management groups revealed a significant difference in FNAE with higher scores for surgery compared to radiation treatment. Regression analyses revealed that FNAE significantly accounted for 10.9% of the variance in QOL. However, no symptom was significantly predictive of FNAE. In conclusion, VS is associated with several symptoms that can persist post-treatment. Body satisfaction contributes to QOL and may differ between management types. However, due to inconclusive findings on the predictability of symptoms on FNAE, other moderator factors could influence these direct relationships. Future studies should evaluate the variables that could mitigate or protect from the impacts of FNAE for this population.
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Medo , Neuroma Acústico , Qualidade de Vida , Humanos , Neuroma Acústico/psicologia , Qualidade de Vida/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Medo/psicologia , Imagem Corporal/psicologia , Idoso , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess preoperative psychological burden in patients with vestibular schwannoma (VS). METHODS: A total of 100 patients undergoing VS resection between September 2019 and June 2020 completed preoperative psychological screening. The Hospital Anxiety and Depression Scale (HADS) was applied the day before surgery, and a score >14 was considered clinically important. Univariate and multivariate logistic regression analyzes were used to identify risk factors associated with increased preoperative psychological stress. RESULTS: Of the 100 patients who underwent VS resection, 44% were male, with a mean age of 45.9 years. Twenty-two (22%) had HADS scores >14. For the univariate analysis, risk factors associated with elevated psychological burden included time since diagnosis, number of symptoms, headache, vertigo, and nausea and/or vomiting. In the regression analysis, the number of symptoms and greater time from diagnosis to treatment correlated with higher preoperative psychological stress. CONCLUSION: Nearly 1 in 4 patients with VS experienced clinically significant emotional burden preoperatively. Number of symptoms and greater time from diagnosis to treatment contributed to this psychological burden.
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Ansiedade/epidemiologia , Depressão/epidemiologia , Neuroma Acústico/psicologia , Neuroma Acústico/cirurgia , Período Perioperatório/psicologia , Estresse Psicológico/epidemiologia , Adulto , Ansiedade/diagnóstico , Depressão/diagnóstico , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Risco , Estresse Psicológico/diagnósticoRESUMO
OBJECTIVE: To assess the impact of differential hearing loss on QOL in sporadic unilateral vestibular schwannoma. PATIENTS AND METHODS: Cross-sectional observational multicenter study including 422 patients with vestibular schwannoma and formal audiometry within 1 year of survey administration, analyzed using multivariable regression. RESULTS: Among 422 patients included, the median age was 57 (range, 18-81) years; 223 (53%) were women. Among 390 patients with complete audiometric data, American Academy of Otolaryngology-Head and Neck Surgery class was A in 134 (34%), B in 69 (18%), C in 26 (7%), and D in 161 (41%). A total of 335 of 390 (86%) reported subjective ipsilateral hearing loss (median severity, 6/10 [1 = normal, 10 = deaf]), 166 (43%) reported ipsilateral inability to use the telephone, 155 (37%) reported that hearing loss had affected personal relationships, and 213 (51%) reported difficulty with conversations. After adjusting for age and sex, the odds ratio (OR) for hearing loss adversely affecting relationships was 4.4 for class B hearing vs class A (95% CI, 2.1-9.4; P<.0001). The OR for difficulty with conversations was 2.7 for class B vs class A (95% CI, 1.4-5.3; P=.003). The OR for lost ipsilateral telephone use was 6.3 for class B vs class A (95% CI, 3.2-13.0; P<.0001). Differences between class B and class C were not significant. WRS outperformed PTA as a predictor of hearing-related QOL. The optimal threshold for predicting a significant adverse impact on QOL was WRS less than 72% to 76%. CONCLUSION: Hearing loss adversely affects QOL after only modest audiometric disability. The WRS alone appears to be a much more reliable predictor of hearing-related QOL than PTA or American Academy of Otolaryngology-Head and Neck Surgery class.
Assuntos
Perda Auditiva/etiologia , Neuroma Acústico/complicações , Qualidade de Vida , Atividades Cotidianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Audiometria , Estudos Transversais , Feminino , Perda Auditiva/psicologia , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/psicologia , Qualidade de Vida/psicologia , Adulto JovemRESUMO
BACKGROUND: The diagnosis of vestibular schwannomas (VS) is associated with reduced patient quality of life (QOL). Minimal clinically important difference (MCID) was introduced as the lowest improvement in a patient-reported outcome (PRO) score discerned as significant by the patient. We formerly presented an MCID for the Penn Acoustic Neuroma QOL (PANQOL) battery based on cross-sectional data from 2 tertiary referral centers. OBJECTIVE: To validate the PANQOL MCID values using prospective data. METHODS: A prospective registry capturing QOL was queried, comprising patients treated at the authors' institution and Acoustic Neuroma Association members. Anchor- and distribution-based techniques were utilized to determine the MCID for domain and total scores. We only included anchors with Spearman's correlation coefficient larger than 0.3 in the MCID threshold calculations. Most domains had multiple anchors with which to estimate the MCID. RESULTS: A total of 1254 patients (mean age: 57.4 yr, 65% females) were analyzed. Anchor-based methods produced a span of MCID values (median, 25th-75th percentile) for each PANQOL domain and the total score: hearing (13.1, 13-16 points), balance (14, 14-19 points), pain (21, 20-28 points), face (25, 16-36 points), energy (16, 15-18 points), anxiety (16 [1 estimate]), general (13 [1 estimate]), and total (12.5, 10-15 points). CONCLUSION: Current findings corroborate our formerly shared experience using multi-institutional, cross-sectional information. These MCID thresholds can serve as a pertinent outcome when deciphering the clinical magnitude of VS QOL endpoints in cross-sectional and longitudinal studies.
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Diferença Mínima Clinicamente Importante , Neuroma Acústico/diagnóstico , Neuroma Acústico/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Estudos de Coortes , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/terapia , Estudos Prospectivos , Sistema de Registros , Resultado do TratamentoRESUMO
Patients with vestibular schwannomas (VS) typically present with hearing loss and tinnitus as well as variable cranial nerve dysfunctions. Surgical resection, stereotactic radiotherapy and/or conservative management employing serial magnetic resonance or computed tomography imaging serve as the main treatment options. Quality of life (QoL) may be impacted by the extent of tumour burden and exacerbated or relieved by treatment. Subjective assessment and quality of life inventories provide valuable information in client centered approaches with important implications for treatment. The intention of QoL measurements affecting VS patients within a clinical setting is to facilitate discussions regarding treatment options and objectively evaluate patient- centered clinical outcomes in a naturalistic setting.
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Neoplasias dos Nervos Cranianos/fisiopatologia , Neoplasias dos Nervos Cranianos/terapia , Neuroma Acústico/fisiopatologia , Neuroma Acústico/terapia , Qualidade de Vida , Doenças do Nervo Vestibulococlear/fisiopatologia , Doenças do Nervo Vestibulococlear/terapia , Adulto , Tratamento Conservador , Neoplasias dos Nervos Cranianos/diagnóstico , Neoplasias dos Nervos Cranianos/psicologia , Feminino , Audição , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/diagnóstico , Neuroma Acústico/psicologia , Procedimentos Cirúrgicos Otológicos , Radiocirurgia , Estudos Retrospectivos , Inquéritos e Questionários , Tomografia Computadorizada por Raios X , Vestíbulo do Labirinto , Doenças do Nervo Vestibulococlear/diagnóstico , Doenças do Nervo Vestibulococlear/psicologiaRESUMO
OBJECTIVE: To evaluate quality-of-life (QOL) in patients with sporadic vestibular schwannoma (VS) with particular focus on those recently diagnosed. STUDY DESIGN: Cross-sectional survey, Penn Acoustic Neuroma Quality of Life (PANQOL) instrument. SETTING: Acoustic Neuroma Association and a single tertiary referral center. PATIENTS: Patients with sporadic VS. MAIN OUTCOME MEASURES: Domain-specific and total PANQOL scores comparing treatment modalities after adjusting for baseline covariates of interest. RESULTS: Among all 1,288 respondents there were 229 (18%) who were recently diagnosed and had not yet selected a treatment modality, 303 (24%) who were observed, 185 (14%) who underwent radiosurgery alone, 507 (39%) who underwent microsurgery alone, and 64 (5%) who underwent radiosurgery and microsurgery. After adjusting for covariates of interest, total PANQOL scores were highest for the observation cohort (65; 95% CI 62-68), lowest for patients treated with multimodality therapy (56; 51-61) and those recently diagnosed (58; 55-62), and intermediate for those who received microsurgery alone (60; 58-62) and radiosurgery alone (61; 57-64) (global comparison, pâ=â0.001). When comparing groups that received single-modality therapy, there were no statistically significant differences in total PANQOL scores at short (0-5 yr), intermediate (6-10 yr), or long-term (≥11 yr) follow-up after adjusting for baseline covariates (all, pâ>â0.05). CONCLUSION: A new diagnosis of VS frequently imparts significant anxiety on the patient and leads to a temporary reduction in QOL. Notably, anxiety domain QOL scores among patients with newly diagnosed VS are poorer than patients who have observed their tumor for 6 months or longer. When feasible, an initial period of observation may afford patients valuable time to reconcile with the new diagnosis, to learn more about treatment options, and to discover whether there is tumor growth. In turn, this valuable information can be used to inform sound decision-making regarding tumor management.
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Neuroma Acústico/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Ansiedade/epidemiologia , Ansiedade/etiologia , Estudos de Coortes , Aconselhamento , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/cirurgiaRESUMO
PURPOSE: To date, little is known about neuropsychiatric symptoms in patients with tumors within the cerebellopontine angle (CPA). These, however, might be of clinical relevance. Aim of this study was thus to assess possible impairment in cognition, elevation in mood symptoms, and fatigue in this specific patient group. METHODS: Forty-five patients with an untreated CPA tumor (27 vestibularis schwannoma, 18 meningioma) were tested within a cross-sectional observational study in a single institution prior to neurosurgical treatment. Patients were administered a multifaceted battery comprising of widely-used tests for assessment of neuropsychiatric functioning. RESULTS: The majority of the included patients (69%) showed neurocognitive impairment, most frequently in the areas of attention and visuo-motor speed (e.g., alertness) (62%) as well as visuo-construction (44%). Impaired structural integrity of the brain stem was accompanied by more serious neurocognitive deficits. About one-third of the sample reported clinically relevant depression and/or anxiety and an even higher proportion (48%) described high levels of fatigue. Cognitive and affective symptoms as well as fatigue contributed significantly to patients' Quality of Life, indicating the clinical relevance of neuropsychiatric symptoms in patients with CPA tumors. CONCLUSIONS: Although patients with untreated CPA tumors often suffer from devastating and prominent physical symptoms, neuropsychiatric problems are also frequent. Including these aspects in the routine clinical assessment and initiating treatment accordingly might thus improve clinical management of the patients and improve Quality of Life.
Assuntos
Neoplasias Meníngeas/psicologia , Meningioma/psicologia , Neurilemoma/psicologia , Neuroma Acústico/psicologia , Adulto , Afeto , Idoso , Ansiedade , Ângulo Cerebelopontino , Cognição , Disfunção Cognitiva/etiologia , Estudos Transversais , Depressão , Fadiga , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Adulto JovemRESUMO
OBJECTIVE: The aim of this study was to compare quality of life (QOL) in small unilateral vestibular schwannoma (VS) patients managed by microsurgery, radiotherapy or observation. STUDY DESIGN: A retrospective chart review. METHODS: The study included a total of 142 patients with VS stage 1 or 2 according to the Koos classification and treated between January 2004 and December 2015. Microsurgery, radiotherapy and observation groups comprised 43, 46 and 53 patients, respectively. All patients completed four QOL (questionnaires: Short-Form Health Survey 36, Hearing Handicap Inventory, Tinnitus Handicap Inventory and Dizziness Handicap Inventory Short-Form). Clinical symptoms and QOL were compared among groups. RESULTS: The average time interval between management and filling in the questionnaires was 66 months. There was no difference in QOL between the three groups on any of the four questionnaires. The most debilitating symptom was vertigo for all three groups. Tinnitus was a pejorative factor in the surgery group. Hearing level was deteriorated after microsurgery but there was no significant difference between the radiotherapy group and the middle fossa approach. CONCLUSION: Patients with small VS stage 1 and 2 had similar QOL, irrespective of management by observation, radiotherapy or microsurgery. The overall predictor for long-term reduced QOL was vertigo. Vestibular rehabilitation could improve QOL in symptomatic patients.
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Microcirurgia/métodos , Neuroma Acústico/psicologia , Procedimentos Cirúrgicos Otológicos/métodos , Qualidade de Vida , Feminino , Seguimentos , Testes Auditivos , Humanos , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/radioterapia , Neuroma Acústico/cirurgia , Radioterapia Adjuvante/métodos , Estudos Retrospectivos , Inquéritos e Questionários , Resultado do TratamentoRESUMO
Neurofibromatosis type 2 (NF2) confronts patients and their relatives with the dual issue of a progressive disease and disability. Deafness creates a brutal rupture in the patients' course of life, and other disabilities often follow in addition, that further deteriorates their quality of life. Hearing rehabilitation, via a cochlear implant and auditory brainstem implant, attempts to reduce the feeling of isolation and suffering due to communication impairment. A NF2-specific quality of life questionnaire not only helps to evaluate the impact of the disease but it is also useful therapy proposals (treatment, auditory implants). This may contribute to improve the quality of care for patients and their families. Within the multidisciplinary NF2 team, the psychologist offers constant listening of patients, and their suffering at each stage of the disease, that takes into account the life context in which the disease occurs, thus playing a major role in the patient care offered.
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Assistência ao Convalescente/psicologia , Neurofibromatose 2/terapia , Neuroma Acústico/terapia , Resultado do Tratamento , Implantes Auditivos de Tronco Encefálico/psicologia , Humanos , Neurofibromatose 2/psicologia , Neuroma Acústico/psicologia , Qualidade de VidaRESUMO
OBJECTIVES: To ascertain primary motivation and long-term satisfaction with treatment selection in patients with vestibular schwannoma. METHODS: A multicenter, cross-sectional survey was performed. Patients with small- to medium-sized sporadic vestibular schwannoma who underwent stereotactic radiosurgery (SRS; n = 247), microsurgery (n = 144), or observation (n = 148) between 1998 and 2008 were surveyed regarding their motivation behind treatment selection and hindsight satisfaction with their choice of management. RESULTS: "Physician recommendation" was the most commonly stated reason for modality selection in all 3 groups. The second and third most common reasons for selecting SRS included "less invasive option than surgery" in 80 patients (32%) and "less recovery time than surgery" in 16 patients (6%). The second and third most common reasons for selecting observation included "to avoid side-effects of treatment" in 25 patients (17%) and "symptoms not severe enough to warrant intervention" in 22 patients (15%). The second and third most common reasons for selecting microsurgery included "do not want tumor in head" in 35 patients (24%) and "most definitive treatment" in 15 patients (10%). Overall, 232 patients (96%) treated with SRS, 141 observed patients (97%), and 121 patients (85%) who underwent microsurgical treatment were satisfied with their original decision (P < 0.001). CONCLUSIONS: Motivation behind treatment selection varies between individuals. Those who select observation and SRS commonly reference less invasiveness and lower risk, whereas those who select microsurgery are commonly motivated by having their tumor physically removed and the more definitive nature of treatment. Posttreatment satisfaction is highest in patients who undergo SRS and observation, although all 3 groups report high levels of satisfaction.
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Tomada de Decisões , Motivação , Neuroma Acústico/psicologia , Neuroma Acústico/terapia , Satisfação do Paciente , Relações Médico-Paciente , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Microcirurgia/estatística & dados numéricos , Pessoa de Meia-Idade , Neuroma Acústico/epidemiologia , Radiocirurgia/estatística & dados numéricos , Fatores de Tempo , Resultado do TratamentoRESUMO
Objective To assess the decision-making process of patients with vestibular schwannoma (VS). Study Design Patients with VS completed a voluntary survey over a 3-month period. Setting Surveys were distributed online through email, Facebook, and member website. Subjects and Methods All patients had a diagnosis of VS and were members of the Acoustic Neuroma Association (ANA). A total of 789 patients completed the online survey. Results Of the 789 participants, 474 (60%) cited physician recommendation as a significant influential factor in deciding treatment. In our sample, 629 (80%) saw multiple VS specialists and 410 (52%) sought second opinions within the same specialty. Of those who received multiple consults, 242 (59%) of patients reported receiving different opinions regarding treatment. Those undergoing observation spent significantly less time with the physician (41 minutes) compared to surgery (68 minutes) and radiation (60 minutes) patients ( P < .001). A total of 32 (4%) patients stated the physician alone made the decision for treatment, and 29 (4%) felt they did not understand all possible treatment options before final decision was made. Of the 414 patients who underwent surgery, 66 (16%) felt they were pressured by the surgeon to choose surgical treatment. Conclusion Deciding on a proper VS treatment for patients can be complicated and dependent on numerous clinical and individual factors. It is clear that many patients find it important to seek second opinions from other specialties. Moreover, second opinions within the same specialty are common, and the number of neurotologists consulted correlated with higher decision satisfaction.
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Tomada de Decisões , Neuroma Acústico/psicologia , Neuroma Acústico/cirurgia , Aceitação pelo Paciente de Cuidados de Saúde , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Encaminhamento e Consulta , Inquéritos e Questionários , Tempo para o TratamentoRESUMO
OBJECTIVE: A 'wait and see' strategy is an option when managing patients with small vestibular schwannomas (VS). A risk of growth and worsening of hearing may influence a patient's daily quality of life (QOL). Therefore, the present study focused on QOL parameters in patients who are on a 'wait and see' strategy following magnetic resonance imaging (MRI)-based diagnosis of small unilateral VS. PATIENTS AND METHODS: Sixty-five patients (mean age 64.4 years; male:female, 32:33) who suffered from a small unilateral VS (9.34 mm, range 1.5-23 mm) between 2013 and 2016 were included in a prospective single center study. During follow-up, in addition to clinical and neurological examinations and MRI imaging, all patients answered the Short Form 36 questionnaire once to characterize QOL. Additionally, the severity of tinnitus was determined by the Mini-TQ-12 from Hiller and Goebel. RESULTS: It was found during follow-up that there was no lowering of QOL in patients with small VS who were on 'wait and see' strategy compared with Germany's general population and no tumor growth was detected in 53 patients (81.5%). Patients with a tumor diameter larger than 10 mm did not suffer from stronger tinnitus, vertigo or unsteadiness than the group with an average tumor size, which is smaller than 10 mm. Sixty-two patients (95.4%) showed ipsilateral hearing loss and three of these reported deafness (4.6%). Severe vertigo or tinnitus is connected with lower levels of mental component scale and physical component scale. These findings reduced the QOL (p = 0.05). CONCLUSION: In our series, QOL is not influenced in patients with unilateral untreated small VS in comparison to Germany's general population. This is helpful information when advising patients during follow-up and finding out the optimal timing of individual treatment.
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Lateralidade Funcional/fisiologia , Neuroma Acústico/fisiopatologia , Neuroma Acústico/psicologia , Qualidade de Vida/psicologia , Idoso , Progressão da Doença , Feminino , Perda Auditiva/etiologia , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Inquéritos e Questionários , Zumbido/etiologia , Vertigem/etiologiaRESUMO
OBJECTIVE: To enhance the understanding of tinnitus origin by disseminating two case studies of vestibular schwannoma (VS) involving behavioural auditory adaptation testing (AAT). DESIGN: Retrospective case study. STUDY SAMPLE: Two adults who presented with unilateral, non-pulsatile subjective tinnitus and bilateral normal-hearing sensitivity. At the initial evaluation, the otolaryngologic and audiologic findings were unremarkable, bilaterally. Upon retest, years later, VS was identified. RESULTS: At retest, the tinnitus disappeared in one patient and was slightly attenuated in the other patient. In the former, the results of AAT were positive for left retrocochlear pathology; in the latter, the results were negative for the left ear although a moderate degree of auditory adaptation was present despite bilateral normal-hearing sensitivity. Imaging revealed a small VS in both patients, confirmed surgically. CONCLUSION: Behavioural AAT in patients with tinnitus furnishes a useful tool for exploring tinnitus origin. Decrease or disappearance of tinnitus in patients with auditory adaptation suggests that the tinnitus generator is the cochlea or the cochlear nerve adjacent to the cochlea. Patients with unilateral tinnitus and bilateral, symmetric, normal-hearing thresholds, absent other audiovestibular symptoms, should be routinely monitored through otolaryngologic and audiologic re-evaluations. Tinnitus decrease or disappearance may constitute a red flag for retrocochlear pathology.
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Percepção Auditiva , Audição , Neuroma Acústico/complicações , Zumbido/etiologia , Adaptação Psicológica , Limiar Auditivo , Testes Auditivos , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/diagnóstico , Neuroma Acústico/fisiopatologia , Neuroma Acústico/psicologia , Valor Preditivo dos Testes , Fatores de Tempo , Zumbido/diagnóstico , Zumbido/fisiopatologia , Zumbido/psicologiaRESUMO
OBJECTIVE: To assess the quality of life (QoL) in a representative sample of patients with vestibular schwannoma and to ascertain the differences in outcomes associated with distinct management strategies. PATIENTS AND METHODS: Patients with vestibular schwannoma attending a tertiary referral center were asked to complete the Functional Assessment of Chronic Illness Therapy-Brain Questionnaire, which assesses QoL in 5 domains: physical, social, emotional and functional, and a brain cancer-specific domain. Results were analyzed in the overall cohort and in surgery, stereotactic radiosurgery, and conservative management subgroups. The relationship between patient clinical characteristics and QoL outcome also was analyzed by univariable and multivariable logistic regression. RESULTS: There were 83 survey respondents with an average age of participants of 57 years and a mean follow-up of 4.9 years. QoL was statistically significantly lower in the surgery subgroup within the Physical QoL domain (P = 0.039); however, there was no significant difference in overall QoL between the 3 subgroups of surgery, radiosurgery, and conservative management (P = 0.17). A poor QoL outcome was associated with the number of symptoms at diagnosis, greater tumor size, and a surgical management strategy. CONCLUSIONS: The QoL within this patient cohort was extremely variable in each management group, mirroring the heterogeneous natural history of this disease process. QoL in patients with vestibular schwannoma cannot be predicted based on management strategy alone, but a poor QoL outcome is more likely in patients with larger, symptomatic tumors that are treated surgically.
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Neuroma Acústico/psicologia , Neuroma Acústico/terapia , Qualidade de Vida/psicologia , Resultado do Tratamento , Adulto , Idoso , Estudos de Coortes , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Procedimentos Neurocirúrgicos/métodos , Radioterapia , Inquéritos e QuestionáriosRESUMO
Objective To perform translation, cross-cultural adaptation, and validation of the Penn Acoustic Neuroma Quality-of-Life Scale (PANQOL) to the Spanish language. Study Design Prospective study. Setting Tertiary neurotologic referral center. Subjects and Methods PANQOL was translated and translated back, and a pretest trial was performed. The study included 27 individuals diagnosed with vestibular schwannoma. Inclusion criteria were adults with untreated vestibular schwannoma, diagnosed in the past 12 months. Feasibility, internal consistency, test-retest reliability, construct validity, and ceiling and floor effects were assessed for the present study. Results The mean overall score of the PANQOL was 69.21 (0-100 scale, lowest to highest quality of life). Cronbach's α was 0.87. Intraclass correlation coefficient was performed for each item, with an overall score of 0.92. The κ coefficient scores were between moderate and almost perfect in more than 92% of patients. Anxiety and energy domains of the PANQOL were correlated with both physical and mental components of the SF-12. Hearing, balance, and pain domains were correlated with the SF-12 physical component. Facial and general domains were not significantly correlated with any component of the SF-12. Furthermore, the overall score of the PANQOL was correlated with the physical component of the SF-12. Conclusion Feasibility, internal consistency, reliability, and construct validity outcomes in the current study support the validity of the Spanish version of the PANQOL.
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Hispânico ou Latino , Neuroma Acústico , Qualidade de Vida , Inquéritos e Questionários , Traduções , Adulto , Idoso , Cultura , Estudos de Viabilidade , Feminino , Perda Auditiva/etiologia , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/complicações , Neuroma Acústico/psicologia , Estudos Prospectivos , Zumbido/etiologiaRESUMO
OBJECTIVE: To report the preliminary outcomes of auditory brainstem implantation (ABI) under a compassionate use protocol for two ABI devices that are not approved by the US Food and Drug Administration. METHODS: A retrospective review was performed of neurofibromatosis type 2 (NF2) patients who underwent microsurgery for vestibular schwannoma (VS) and placement of either the Cochlear ABI541 or Med-El Synchrony ABIs. Peri-operative and device- related complications were reviewed. Audiometric performance was also evaluated. RESULTS: Seven patients received either the Cochlear ABI541 (6) or the Med-El Synchrony ABI (1) after the resection of VS. No device or patient-related complications occurred to date. Surgical times and early audiological performance are similar to our previous experience with the Cochlear ABI24 device. CONCLUSIONS: Early experience with the Cochlear ABI541 and Med-El Synchrony ABI devices under a compassionate use protocol suggest that both devices are safe with comparable utility to the Cochlear ABI24 device.
Assuntos
Implante Auditivo de Tronco Encefálico/instrumentação , Implantes Cocleares , Ensaios de Uso Compassivo , Neurofibromatose 2/cirurgia , Neuroma Acústico/cirurgia , Adolescente , Adulto , Audiometria , Implante Auditivo de Tronco Encefálico/métodos , Percepção Auditiva , Cóclea/cirurgia , Aprovação de Equipamentos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neurofibromatose 2/complicações , Neurofibromatose 2/psicologia , Neuroma Acústico/etiologia , Neuroma Acústico/psicologia , Período Pós-Operatório , Estudos Retrospectivos , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Stereotactic radiotherapy (RT) has been established as a valid treatment alternative in patients with vestibular schwannoma (VS). There is ongoing controversy regarding the optimal fractionation. Hearing preservation may be the primary goal for patients with VS, followed by maintenance of quality of life (QoL). METHODS: From 2002 to 2015, 184 patients with VS were treated with radiosurgery (RS) or fractionated stereotactic radiotherapy (FSRT). A survey on current symptoms and QoL was conducted between February and June 2016. RESULTS: Median follow-up after RT was 7.5 years (range 0-14.4 years). Mean overall survival (OS) after RT was 31.1 years, with 94 and 87% survival at 5 and 10 years, respectively [corrected]. Mean progression-free survival (PFS) was 13.3 years, with 5 and 10-year PFS of 92%. Hearing could be preserved in RS patients for a median of 36.3 months (range 2.3-13.7 years). Hearing worsened in 17 (30%) cases. Median hearing preservation for FSRT was 48.7 months (range 0.0-13.8 years); 29 (23%) showed hearing deterioration. The difference in hearing preservation was not significant between RS and FSRT (p = 0.3). A total of 123/162 patients participated in the patient survey (return rate 76%). The results correlate well with the information documented in the patient files for tinnitus and facial and trigeminal nerve toxicity. Significant differences appeared regarding hearing impairment, gait uncertainty, and imbalance. CONCLUSION: These data confirm that RS and FSRT are comparable in terms of local control for VS. RS should be reserved for smaller lesions, while FSRT can be offered independently of tumor size. Patient self-reported outcome during follow-up is of high value. The established questionnaire could be validated in the independent cohort.
Assuntos
Perda Auditiva/prevenção & controle , Neuroma Acústico/mortalidade , Neuroma Acústico/radioterapia , Qualidade de Vida/psicologia , Lesões por Radiação/prevenção & controle , Radiocirurgia/mortalidade , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Fracionamento da Dose de Radiação , Feminino , Seguimentos , Alemanha/epidemiologia , Perda Auditiva/psicologia , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neuroma Acústico/psicologia , Tratamentos com Preservação do Órgão/mortalidade , Tratamentos com Preservação do Órgão/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Lesões por Radiação/mortalidade , Radiocirurgia/estatística & dados numéricos , Fatores de Risco , Autorrelato , Taxa de Sobrevida , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Various individual factors have been described to influence postural performances related to vestibular schwannoma. However, psychological factors may also be involved in postural variations. OBJECTIVE: To identify relationships between postural performances, illness perceptions, coping, anxiety-depression and quality of life of patients with vestibular schwannoma. METHODS: Twenty-six patients who were scheduled for a surgical removal of a vestibular schwannoma underwent posturography tests and were asked to complete psychological questionnaires three days prior to surgery.The Sensory Organization Test, the Illness Perceptions Questionnaire-Revised, the Brief-COPE, the Hospital Anxiety Depression Scale and the World Health Organization Quality of Life instrument were used for assessments. Correlations between posturography and psychological questionnaires were calculated. RESULTS: Balance disorders were associated with (i) impaired quality of life of patients, (ii) anxiety and depression affects, (iii) greater daily consequences, and with (iv) denial coping response. CONCLUSIONS: Given the association between balance disorders and psychological factors, health practitioners should be attentive to the deterioration of both aforementioned issues.
Assuntos
Neuroma Acústico/fisiopatologia , Neuroma Acústico/psicologia , Equilíbrio Postural , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Negação em Psicologia , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Desempenho Psicomotor , Qualidade de Vida , Autoimagem , Inquéritos e Questionários , Testes de Função VestibularRESUMO
OBJECTIVES/HYPOTHESIS: Drawings made by patients are an innovative way to assess the perceptions of patients on their illness. The objective of this study, at a university tertiary referral center, on patients who have recently been diagnosed with vestibular schwannoma, was to examine whether patients' illness perceptions can be assessed by drawings and are related to their quality of life. STUDY DESIGN: Cross-sectional study. METHODS: Patients diagnosed with vestibular schwannoma (mean age [range], 55.4 [17-85] years) between April 2011 and October 2012 were included (N = 253). Sociodemographics, illness perceptions (Brief Illness Perception Questionnaire [B-IPQ]), and disease-specific quality of life (Penn Acoustic Neuroma Quality of Life [PANQOL] scale) were assessed to evaluate the impact of being diagnosed with vestibular schwannoma. Furthermore, patients' drawings of their tumor were analyzed to explore the association between illness perceptions, drawings, and quality of life. RESULTS: Comparison of the B-IPQ scores of the current sample (N = 139; response rate 54.9%) with other disease samples shows a significantly lower score for patients with vestibular schwannoma on the Coherence dimension, indicating a low understanding of the illness. Illustration of emotions (N = 12) in the drawings gave a negative association with quality of life. Intercorrelations indicate a positive association between a low amount of physical and emotional consequences of the illness and a higher score on the Balance, Hearing, and Energy dimensions of the PANQOL. CONCLUSIONS: Patients' drawings give an insight into their perception of the tumor inside their head. Use of drawings may be helpful when developing and offering self-management programs. Quality of life appears to be significantly affected by the diagnosis. LEVEL OF EVIDENCE: 4.