title: Self-reported symptoms and patient experience: A British Acoustic Neuroma Association survey.
abstract: OBJECTIVE
  To assess patient-reported outcomes and experience of vestibular schwannoma (VS) management.
  
  
  METHODS
  Survey of members of the British Acoustic Neuroma Association (BANA).
  
  
  METHODS
  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.
  
  
  RESULTS
  
  
  
  METHODS
  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%).
  
  
  CONCLUSIONS
  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.
authors.affiliation: a University Hospitals Bristol NHS Foundation Trust , UK.
authors.forename: Stephen J
authors.initials: SJ
authors.lastname: Broomfield
authors.affiliation: b The National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Unit and Nottingham University Hospitals NHS Trust , UK.
authors.forename: Gerard M
authors.initials: GM
authors.lastname: O'Donoghue
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D034381:Hearing Loss / Q000175:diagnosis* / Q000628:therapy; D006801:Humans; D008297:Male; D008875:Middle Aged; D009464:Neuroma, Acoustic / Q000175:diagnosis* / Q000628:therapy*; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires; D014012:Tinnitus / Q000175:diagnosis
keywords: acoustic neuroma; outcome; treatment; vestibular schwannoma