Broomfield Stephen J, O'Donoghue Gerard M
a University Hospitals Bristol NHS Foundation Trust , UK.
b The National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Unit and Nottingham University Hospitals NHS Trust , UK.
Br J Neurosurg. 2016 Jun;30(3):294-301. doi: 10.3109/02688697.2015.1071323. Epub 2015 Nov 2.
To assess patient-reported outcomes and experience of vestibular schwannoma (VS) management.
Survey of members of the British Acoustic Neuroma Association (BANA).
Members of the BANA were invited to complete an online survey. Questions were divided into five areas: Demographic details; symptoms at diagnosis; level of information received; treatment after-effects; and overall experience of diagnosis and/or treatment.
598 (58%) BANA members completed the survey. 77.1% of respondents were aged between 41 and 70 years. Symptoms at diagnosis: hearing loss (84%), unilateral tinnitus (40%) and imbalance (51%) were commonest. Isolated tinnitus and imbalance occurred in 2% and 6%, respectively. Information received: 39% stated they were given 'just the right amount of information about all management options', and 32% 'not enough information'. Treatment after-effects: Overall quality of life was classified as 'a lot better' (11%), 'a little better' (7%), 'unchanged' (25%), 'a little worse' (38%) and 'a lot worse' (19%). 61% respondents continued in the same job. Return to social life, hobbies and sports was impaired in 65%. Overall experience: Experience of treatment was graded as 'much better than expected' (20%), 'a little better' (15%), 'about the same' (27%), 'a little worse' (22%) and 'much worse' (16%).
Quality of life measures are important in assessing VS management outcomes, and will increasingly inform clinical decision-making. Further examination of how patients with VS perceive their disease, cope with illness and use social support networks may also help to inform future practice and the creation of decision analytical models.
评估患者报告的前庭神经鞘瘤（VS）治疗结果及体验。
对英国听神经瘤协会（BANA）成员进行调查。
邀请BANA成员完成一项在线调查。问题分为五个领域：人口统计学细节；诊断时的症状；所获信息水平；治疗后效应；以及诊断和/或治疗的总体体验。
598名（58%）BANA成员完成了调查。77.1%的受访者年龄在41至70岁之间。诊断时的症状：听力损失（84%）、单侧耳鸣（40%）和失衡（51%）最为常见。孤立性耳鸣和失衡分别发生在2%和6%的患者中。所获信息：39%的人表示他们得到了“关于所有治疗选择的适量信息”，32%的人表示“信息不足”。治疗后效应：总体生活质量被分类为“好多了”（11%）、“稍好一些”（7%）、“不变”（25%）、“稍差一些”（38%）和“差得多”（19%）。61%的受访者继续从事原工作。65%的人恢复社交生活、爱好和运动受到影响。总体体验：治疗体验被评为“比预期好得多”（20%）、“稍好一些”（15%）、“差不多”（27%）、“稍差一些”（22%）和“差得多”（16%）。
生活质量指标在评估VS治疗结果中很重要，并且将越来越多地为临床决策提供依据。进一步研究VS患者如何看待自己的疾病、应对疾病以及利用社会支持网络，可能也有助于为未来的实践以及决策分析模型的创建提供依据。
