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

  • Carlo ColosimoEmail author
  • David Charles
  • Vijay P. Misra
  • Pascal Maisonobe
  • Savary Om
  • the INTEREST IN CD2 study group
Original Communication



Patients 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.


This 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.


Subject 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.


Despite 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.


Botulinum toxin Cervical dystonia Observational study Satisfaction Treatment 



The INTEREST IN CD2 study is sponsored by Ipsen Pharma. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this work is consistent with those guidelines. The authors wish to thank all participating sites, principal investigators, sub-investigators, study coordinators and patients who contributed to the INTEREST IN CD2 study. We thank Anita Chadha-Patel PhD of ACP Clinical Communications Ltd (Hertfordshire, UK) for providing medical writing support, which was funded by Ipsen (Paris, France) in accordance with Good Publication Practice guidelines.

The members of the INTEREST IN CD2 study group: Abdulnayef A, Adatepe NU, Araujo Leite MA, Badarny S, Bajenaru O, Bares M, Bejjani P, Bergmans B, Bhidayasiri R, Bozic H, Cardoso Costa FE, Carlstrom C, Castelnovo G, Chang MH, Chang YY, Chung TM, Coletti-Moja M, Delvaux V, Dioszhegy P, Dogu O, Duzynski W, Ehler E, Espinosa Sierra L, Fabbrini G, Ferreira J, Ferreira Valadas A, Foresti C, Girlanda P, Goh KJ, Graca Velon A, Grill S, Gurevitch T, Hadidi M, Hamimed MA, Hamri A, Harrower T, Hassin S, Hedera P, Hernandez JFJG, Hernandez Franco J, Ho B, Ho SL, Hughes A, Ilic T, Inshasi JS, Ip CW, Jamieson S, Jamora RDG, Jech R, Jeon BS, Kaminska A, Karpova M, Khasanova D, Kim JM, Kim JW, Kok CY, Korenko A, Korv J, Koussa S, Kovacs T, Kreisler A, Krystkowiak P, Kumthornthip W, Lin CH, Lundin F, Lus G, Magalhaes M, Masmoudi AN, Mercelis R, Misbahuddin A, Moebius C, Mohammadi B, Nazem B, Ng K, Nurlu G, Nyberg J, Nyholm D, Ochudlo S, Otruba P, Pfister R, Pirtosek Z, Pokhabov D, Quinones Aguilar S, Quinones Canales G, Raghev S, Rickmann H, Romano M, Rosales RL, Rubanovits I, Santilli V, Schoels L, Simonetta-Moreau M, Simu MA, Sohn YH, Soulayrol S, Supe I, Svetel M, Sycha T, Tan EK, Timerbaeva S, Tokcaer AB, Trosch R, Tugnoli V, Tumas V, Van der Linden C, Vetra A, Vial C, Vidry E, Williams D, Wimalaratna S, Yiannikas C.

Author contributions

Substantial contributions to study conception/design, or acquisition/analysis/interpretation of data: CC, DC, VPM, PM and SO. Drafting of the publication, or revising it critically for important intellectual content: CC, VPM, DC, PM and SO. Final approval of the publication: CC, VPM, DC, PM and SO.


This study was sponsored by Ipsen Pharma.

Compliance with ethical standards

Conflicts of interest

Prof C Colosimo reports consultancy for Ipsen, Merz, Abbvie, BIAL, Zambon and UCB. Vanderbilt University receives income from Abbott, Allergan, Boston Scientific, Ipsen, Lundbeck, Merz, Medtronic, and US WorldMeds for research or educational programs led by Dr D Charles. Dr D Charles receives income from Allergan, Ipsen, Revance, US WorldMeds, and the Alliance for Patient Access for education or consulting services. Dr VP Misra report consultancy for Ipsen. P Maisonobe & Dr S Om are Ipsen employees.

Ethical standard

The study was conducted in compliance with the International Society for Pharmacoepidemiology (ISPE) Guidelines for Good Pharmacoepidemiology Practices (GPP). Independent Ethics Committee/Institutional Review Board approval was obtained prior to each centre initiation.

Informed consent

Written informed consent was obtained prior to subject enrolment and performance of any study procedures.

Supplementary material

415_2019_9527_MOESM1_ESM.pdf (168 kb)
Supplementary file1 (PDF 168 kb)


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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of NeurologySanta Maria University HospitalTerniItaly
  2. 2.Department of NeurologyVanderbilt University Medical CenterNashvilleUSA
  3. 3.Department of NeurologyImperial College Healthcare NHS TrustLondonUK
  4. 4.Ipsen PharmaBoulogne-BillancourtFrance

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