How satisfied are cervical dystonia patients after 3\xa0years of botulinum toxin type A treatment? Results from a prospective, long-term observational study

Carlo Colosimo,Vijay P Misra,Savary Om,Pascal Maisonobe,David Charles

doi:10.1007/s00415-019-09527-2

Carlo Colosimo, Vijay P Misra + Show 3 more

Open Access

https://doi.org/10.1007/s00415-019-09527-2

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Abstract

BackgroundPatients with cervical dystonia (CD) typically require regular injections of botulinum toxin to maintain symptomatic control. We aimed to document long-term patient satisfaction with CD symptom control in a large cohort of patients treated in routine practice.MethodsThis was a prospective, international, observational study (NCT01753349) following the course of adult CD treated with botulinum neurotoxin type A (BoNT-A) over 3 years. A comprehensive clinical assessment status was performed at each injection visit and subjects reported satisfaction in two ways: satisfaction with symptom control at peak effect and at the end of treatment cycle.ResultsSubject satisfaction remained relatively stable from the first to the last injection visit. At 3 years, 89.9% of subjects reported satisfaction with symptom control at peak effect and 55.6% reported satisfaction with symptom control at end of treatment cycle. By contrast, objective ratings of CD severity showed an overall reduction over 3 years. Mean ± SD Toronto Western Spasmodic Rating Scale (TWSTRS) Total scores (clinician assessed at end of treatment cycle) decreased from 31.59 ± 13.04 at baseline to 24.49 ± 12.43 at 3 years (mean ± SD reduction from baseline of − 6.97 ± 11.56 points). Tsui scale scores also showed gradual improvement; the percent of subjects with a tremor component score of 4 reduced from 12.4% at baseline to 8.1% at 3 years.ConclusionsDespite objective clinical improvements over 3 years, subject satisfaction with symptom control remained relatively constant, indicating that factors other than symptom control also play a role in patient satisfaction.

Highlights

Primary cervical dystonia (CD) is the most common type of adult focal dystonia and is primarily characterised by involuntary twisting or turning of the neck causing an abnormal head position [1,2,3]
The study was conducted in compliance with the International Society for Pharmacoepidemiology (ISPE) Guidelines for Good Pharmacoepidemiology Practices (GPP) [23]; it began on 10 December 2012 and the last visit occurred on 25 September 2017
The INTEREST IN CD2 study represents the largest CD patient cohort treated with botulinum neurotoxin type A (BoNT-A) to be followed longitudinally over 3 years

Summary

Introduction

Primary cervical dystonia (CD) is the most common type of adult focal dystonia and is primarily characterised by involuntary twisting or turning of the neck causing an abnormal head position [1,2,3]. Other studies have identified the inconvenience of frequent injections (e.g., long travel distances and costs) and high out-of-pocket costs as other possible causes of discontinuation [16, 19] Such data indicate the need to set reasonable patient expectations of treatment [7]. A comprehensive clinical assessment status was performed at each injection visit and subjects reported satisfaction in two ways: satisfaction with symptom control at peak effect and at the end of treatment cycle. At 3 years, 89.9% of subjects reported satisfaction with symptom control at peak effect and 55.6% reported satisfaction with symptom control at end of treatment cycle. Conclusions Despite objective clinical improvements over 3 years, subject satisfaction with symptom control remained relatively constant, indicating that factors other than symptom control play a role in patient satisfaction

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