Abstract
In facial nerve dysfunction literature, subjective reporting tools lack essential construct validity arising from a patient-driven design process.
Elicit patient-identified themes of importance pertaining to disease course in facial nerve dysfunction from a variety of etiologies.
Twenty participant interviews were conducted from a standardized script and analyzed using a thematic analysis framework. Subsequently, four participants participated in a modified Delphi focus group for consensus of relative theme and domain importance.
Upon thematic analysis of 315 codable phrases, 33 codes were sorted into six domains. In descending order: smiling, facial symmetry, surgical access, self-consciousness, eye care, eating, lip movement, eye closure, beverage consumption, speech, chewing, drooling, eyebrow raise, mouth closure, and ptotic vision limitations were identified as the most important aspects of disease course. Care experience, defined as areas of interaction with the health care system in which patients felt strongly about their care or outcome, was the most important domain to participants.
Patients with facial nerve dysfunction identified care experience as the highest domain of importance, and value smiling, facial symmetry, and access to surgical treatments.