Patient-reported outcomes following a break in ophthalmic botulinum toxin therapy during the COVID-19 pandemic

To evaluate the effect of a break in botulinum toxin treatment, necessitated by the COVID-19 pandemic, on patients' quality of life.

Prospective cohort study of all patients undergoing incobotulinumtoxinA treatment in our department-for benign essential blepharospasm (BEB), hemifacial spasm (HFS), aberrant facial regeneration (AFR), or crocodile tears-who were affected by the break in service (March 18, 2020-June 17, 2020). All patients who received treatment both before and after the break in service were included. Data gathered included subjective patient-reported measure of "time until treatment failure" and disease rating scale scores: Blepharospasm-Dystonia Functional Disability Assessment Scale (BDFDAS; for BEB, HFS, and AFR); Jankovic Rating Scale (JRS; for BEB and HFS); and TEARS Epiphora Grading Scale (for crocodile tears).

Across 72 patients, there was a mean treatment delay of 3.9 months (range, 0-9.8 months). After a period of effect, treatment failed in all patients, with a mean time until treatment failure of 3.9 months (range, 0.5-12.0 months). All patient-reported outcome measurements increased, with greatest effect seen in AFR (178% increase in BDFDAS) and BEB (41% increase in JRS). At least 2 patients sought and underwent retreatment elsewhere in the private sector because of their symptom severity.

Patients with AFR and BEB are likely to tolerate a break in service least, whereas patients with crocodile tears appear to be less affected. This real-world snapshot allows quantification of the harm caused by a break in botulinum toxin service or a treatment delay. This study provides valuable information should further breaks in service or treatment delay be considered in the future due to a further wave of COVID-19 or other reasons.