A patient-needs assessment in the management of vestibular schwannoma

Background: Decision aids have evolved as a tool utilizing evidence-based information to help patients understand treatment options and are nascent in the field of neurotology. Vestibular schwannoma management consists of observation, microsurgery, and / or radiation. A decision aid has the potential to help patients understand treatment options regarding vestibular schwannomas while functioning in a patient-centered environment. Objective: To conduct a patient needs assessment in the diagnosis and management of vestibular schwannoma to inform draft decision aid development. Setting and Participants: Eight patients between 45 and 74 years of age who received a diagnosis of a unilateral vestibular schwannoma and received care from a radiation oncologist, neurosurgeon, or otolaryngologist were interviewed. Results: Five themes were identified: initial health literacy, expanded vestibular schwannoma knowledge, provider influence, sources of information, and additional supports. Interviews revealed participant’s desired vestibular schwannoma information at diagnosis, throughout treatment, and following management. Conclusions: Understanding patient needs is foundational when providing patient-centered care and in decision aid development. Vestibular schwannoma patients sought information regarding the risks and benefits of management options, sources of support throughout management, and post-management care. This data may be used to develop a draft decision aid for patients who have received a vestibular schwannoma diagnosis.