Shedding Light on Blepharospasm: A Patient–Researcher Partnership Approach to Assessment of Photophobia and Impact on Activities of Daily Living

Abstract

This study assessed photophobia in patients with benign essential blepharospasm (BEB), and determined the impact of blepharospasm on activities of daily living. Utilizing a patient–researcher collaborative approach, this study was conducted in partnership with the Benign Essential Blepharospasm Research Foundation. Of 316 respondents, 94% reported light sensitivity and 25% reported severe activity limitations. Photophobia appears to be more prominent in BEB than previously thought. Light exacerbates and triggers symptoms that compromise quality of life by affecting daily activities. Collaboration with self-advocates can be an effective way to conduct questionnaire-based research. The authors recommend development of other studies that use this type of partnership.

KEYWORDS:

• Activities of daily living
• BEB
• blepharospasm
• dystonia
• movement disorder
• photophobia
• quality of life