Abstract Details

Title Gaps in the Management of Cervical Dystonia with Botulinum Toxin A: Findings from an Online Patient Survey

Topic Movement Disorders

Presentation(s) P15 - Poster Session 15 (12:00 PM-1:00 PM)

Poster/Presentation
Number 3-010

Objective To conduct a real-world survey of cervical dystonia (CD) patients who are currently or previously treated with botulinum neurotoxin type A (BoNT-A).

Background BoNT-A is considered the first line treatment for CD. Prior patient surveys have reported that BoNT-A treatment improves quality of life but that symptoms usually recur at the end of a treatment cycle.

Design/Methods An international online survey (Europe/USA) was developed to explore patient experiences with BoNT-A treatment and distributed through the social media platform Carenity. Respondents were included if they had ≥2 prior BoNT-A injections.

Results Of the 372 online responses, 209 respondents (80.9% female, median age 48 years (25–78), mean±SD CD duration 9.8±11.9 years) met screening criteria and were included. The mean±SD delay to diagnosis was 3.3±7.8 years. The most frequent CD symptoms were pain (85.7%) and muscle spasms (71.3%). Loss or part time employment due to CD was reported by 48.4%. Most (98.1%) were currently being treated with BoNT-A for a mean±SD of 5.5±6.9 years, with 90% having ≥4 injections. Overall, 14.4% said they receive treatment at intervals of <3 months and 83.3% reported intervals of 3-6 months. 59.8% reported having their injections at regular/fixed intervals, while others said the timing of injections depended on symptom reemergence (24.9%) or injector availability (13.4%). 26.8% of respondents said they would like their sessions to be arranged differently. Symptom reemergence was frequently cited as affecting the respondents work efficiency (65.6%) and comfort at work (66.4%). A third (33.6%) reported having time off work due to CD symptoms.

Conclusions The results of this real-world survey show that there remains a 3-year delay in diagnosis of CD. Although subjects continue to receive BoNT-A with benefit, recurrence of symptoms prior to next treatment negatively impact ability to work in at least two-thirds of patients.

Authors/Disclosures
Cynthia L. Comella, MD, FAAN (Rush University Medical Center) PRESENTER	Dr. Comella has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Ipsen. Dr. Comella has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vima. Dr. Comella has received publishing royalties from a publication relating to health care. Dr. Comella has received publishing royalties from a publication relating to health care.
Joaquim Ferreira (Instituto De Medecina Molecular Lisboa)	No disclosure on file
Savary Om	No disclosure on file

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