LIVECHART Patient‐Reported Outcome Tool for Botulinum Toxin Treatment in Cervical Dystonia

BACKGROUND: Many tools used for recording the response to botulinum toxin treatment are disease‐specific, observer‐based and cumbersome to implement in service settings, especially where clinics treat a variety of disorders. Physicians, clinics, researchers, and patients themselves could benefit from a practical and generic patient‐reported outcome tool. The Liverpool botulinum toxin effects chart (LIVECHART) is a patient‐administered questionnaire developed and used informally over 25 years in a major UK botulinum toxin treatment clinic. In preparation for more formal validation studies, this cross‐sectional study aimed to understand how well LIVECHART captures the effects of botulinum toxin treatment, using patients with cervical dystonia as exemplars. METHODS: LIVECHART questionnaires were completed by 90 patients with cervical dystonia who had each experienced at least three previous botulinum toxin injection cycles with completed LIVECHARTs. RESULTS: There were significant positive correlations between Likert scores (major deterioration—major benefit) for botulinum toxin treatment effects, and measures derived from weekly visual analog scale (VAS) scores (0–100), including (1) baseline to peak effect, (2) Area Under the benefit Curve (AUC) of current cycle, (3) peak effect duration, (4) duration of acceptable benefit, (5) time back to baseline. The AUC of the current cycle was positively correlated with (1) VAS change baseline to peak effect, and (2) week worn off completely. CONCLUSIONS: We conclude that LIVECHART has high internal consistency and reliability. It adequately reflects amplitude, duration and overall benefit of botulinum toxin treatment, and is worth further formal evaluation to determine its validity and reliability.