2026 American Academy of Neurology Abstract Website

Objective:

Review the demographics of patients using complementary and alternative therapies (CAT), types of CAT and their benefits. We carried out an international survey analysing CAT use in patients with various types of adult onset idiopathic focal dystonias (AOIFD).

Background:

The mainstay of treatment of the AOIFDs is botulinum toxin (BoNT). Despite this, many patients continue to report treatment dissatisfaction.

CAT are not considered part of conventional medicine but their use is common. CAT use and its effectiveness has not been studied in AOIFDs. Types of CAT, their benefits and cost are also not known.

Design/Methods:

Participants with AOIFD were invited to take part in an international online survey between February 2023 and March 2024. Patients were surveyed based on location, type of AOIFD, use of CAT and their perceived benefits.

Results:

921 responses were received from 38 countries. 474 (51%) respondents had isolated cervical dystonia (CD). 637 (69%) of our cohort were being treated with BoNT, 380 (41%) were taking prescription oral medications; 257 (28%) used both.

614 (67%) of respondents reported use of CAT. Over a 120 different CAT were listed. Most patients (84%) used a combination e.g., yoga,massage and CBD being the most common. Use of CAT was reasonably evenly spread throughout the AOIFD phenotypes. 364 (59%) agreed or strongly agreed that CAT helped with their motor symptoms and 451 (73%) agreed or strongly agreed that CAT helped treat their non-motor symptoms (pain, anxiety, depression). 132 (21%) agreed or strongly agreed with the statement that complementary therapies were more effective than BoNT.

Conclusions:

This is the first study examining utilization, cost and effectiveness of CAT. More than two thirds of our respondents use CAT. Yoga, massage and cannabis are the most frequently used. These therapies carry a marked perceived benefit in non-motor symptoms and have a significant positive impact on motor symptoms.