Self-reported symptoms and patient experience: A British Acoustic Neuroma Association survey.

OBJECTIVE

To assess patient-reported outcomes and experience of vestibular schwannoma (VS) management.

STUDY DESIGN

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.

DEMOGRAPHICS

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%).

CONCLUSION

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.