A United Kingdom survey of concerns, needs, and priorities reported by patients diagnosed with acoustic neuroma.

INTRODUCTION: The Patient Concerns Inventory-Acoustic Neuroma (PCI-AN) was developed to explore specifically the concerns that patients would like to discuss during their clinic consultation. The PCI covers a range of issues including hearing, intimacy, fatigue, financial/benefits, relationships, regret, and support for family. It also lists multidisciplinary team (MDT) members that patients would like to see or be referred on to.

METHOD: The PCI-AN was emailed to members of the British Acoustic Neuroma Association.

RESULTS: A total of 465 complete (54.5%) responses were received. There were 284 female and 181 male subjects. Overall, the most common treatment modality was surgical excision (47%). A quarter of the study cohort had stereotactic radiosurgery, whereas 23% were conservatively managed with interval MRI scanning. The remaining 5% had both surgery and stereotactic radiosurgery. From the 55-item PCI-AN, the most commonly selected issues that patients wanted to talk about were related to the physical and functional well-being and treatment received. Tinnitus was the most frequently selected issue (46%), followed by fatigue/tiredness (43%), dizziness (33%), further investigation (39%), acoustic neuroma treatment (38%), and energy levels (32%). More than a quarter of the respondents had fears of their acoustic neuroma recurring (29%), had concerns about their facial appearance/ palsy (29%), or suffered pain in the head and neck region (26%). The 3 health-care professionals patients most wanted to talk with either in clinic or by referral were as follows: ENT/neurosurgeon (39%), vestibular (balance) physiotherapist (39%), and audiologist (39%). Although it was unknown how many respondents had facial palsy, 21% wanted to see a facial palsy physiotherapist, and another 10% sought referral to a plastic surgeon.

CONCLUSION: The PCI-AN has shed light on an interesting array of issues, which may be overlooked by clinicians in busy skull base clinic. The PCI-AN allows for patient-directed consultation and ultimately empowers them to be actively involved in the management of their health.