The Illness and Treatment Beliefs of Adults with Blepharospasm and Hemifacial Spasm Receiving Botulinum Toxin Injections: A Cross-Sectional Study

Abstract Background/ Aims: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) cause eyelid and/or facial spasms. Treatment with botulinum toxin leads to a cyclical pattern of relief followed by symptoms returning. Limited evidence suggests a link between patients’ beliefs about their symptoms and perceived efficacy of treatment but further research is needed to establish the specific beliefs held by BEB and HFS about their condition and its treatment. Methods: A cross-sectional study of 130 patients with BEB or HFS was conducted at Moorfields Eye Hospital, London. Beliefs about the conditions and treatments were assessed using the Illness Perceptions Questionnaire (IPQ-R) and Treatment Representations Inventory (TRI). Patients also completed the Blepharospasm Disability Index (BSDI) and Craniocervical Dystonia Questionnaire (CDQ-24). Severity and frequency of spasms were recorded using the Jankovic Rating Scale (JRS). Relationships between the outcomes were identified using Pearson’s product-moment correlation. Results: A range of beliefs about the conditions and botulinum toxin were identified: participants associated BEB and HFS with a chronic timeline and believed their condition was not caused by psychological factors, risks, or their personality or lifestyle. Participants also demonstrated decision satisfaction related to treatment but had some treatment concerns. There was notable uncertainty in a number of patients’ beliefs. Conclusions: Participants believed their condition to be chronic and generally understood what caused BEB or HFS. Strong relationships between patients’ beliefs about their condition and treatment, and aspects of quality of life, were identified. This study highlights the uncertainty patients face in managing their condition which could be addressed in future interventions to improve patient outcomes, including quality of life.