Comparing patient, casual observer, and expert perception of permanent unilateral facial paralysis

IMPORTANCE: Differences in perception of facial paralysis among patients, casual observers, and experts may have implications for outcomes research and patient care. OBJECTIVE: To compare multiple domains of casual observer and expert perception with the actual experience of patients with permanent unilateral facial paralysis. DESIGN, SETTING, AND PARTICIPANTS: This investigation was a prospective cohort study conducted at an academic tertiary referral center. Patients with permanent unilateral facial paralysis (House-Brackmann grades IV to VI) were randomly selected from The Johns Hopkins University Division of Facial Plastic and Reconstructive Surgery clinic. A diverse group of casual observers and experts were recruited to rate their perception of each patient with facial paralysis. The study dates were July 2014 to July 2015. MAIN OUTCOMES AND MEASURES: Patients rated their paralysis severity, attractiveness, quality of life, and affect using established metrics. Casual observers and experts viewed standardized facial videos of each patient and then used the same metrics to rate each patient’s paralysis severity, attractiveness, quality of life, and affect. RESULTS: The analysis yielded 40 patient observations, 6400 casual observer observations, and 200 expert observations for each outcome metric in the study. Compared with the patients’ self-perception, casual observers and experts rated patients with facial paralysis more negatively in all measured domains. A multivariable mixed-effects regression showed that observers perceived patients as having greater paralysis severity (8.49 [95% CI, −0.65 to 17.64] of 100 points; SE, 4.67), being less attractive (−7.71 [95% CI, −14.92 to −0.50] of 100 points; SE, 3.68), and having a worse quality of life (−7.76 [95% CI, −14.18 to −1.34] of 100 points; SE, 3.28) compared with the patients’ perceptions. Logistic regression demonstrated that observers were less likely to rate patients’ affect as positive (odds ratio, 0.28 [95% CI, 0.14-0.58]; SE, 0.10) compared with the patients’ self-rating. The raw data and regression analyses also showed that patients, casual observers, and experts perceived faces with higher House-Brackmann grades more negatively in all measured domains of facial perception. CONCLUSIONS AND RELEVANCE: This study found that casual observers and experts generally perceive patients with facial paralysis more negatively than patients perceive themselves. These findings have implications for patients and facial plastic surgeons alike. They also emphasize the importance of assessing outcomes from all 3 perspectives. This pilot study lays the groundwork for developing new tools to assess the social perception of facial deformity that could lead to advancement in facial paralysis outcomes research and improved care for patients with facial paralysis. LEVEL OF EVIDENCE: NA.