Botulinum toxin and conservative treatment strategies in people with cervical dystonia: an online survey.

Isolated cervical dystonia is a focal, idiopathic dystonia affecting the neck muscles. Treatment usually consists of botulinum neurotoxin (BoNT) injections into the dystonic muscles. Our aim is to investigate the use of BoNT treatment and conservative treatments by people living with cervical dystonia. An online survey in English was conducted between June and August 2022. Participants were eligible to participate if they were living with cervical dystonia, were over 18 years old and could read and understand English. The survey consisted of demographic questions, characteristics of dystonia, questions relating to BoNT use and the perceived utility of conservative treatments. The data were analysed descriptively, and open-ended questions were grouped into similar topics represented by direct quotes. We received 128 responses from people with cervical dystonia, with an average age of 59 years and 77% women. Most participants (52%) described their cervical dystonia as mild to moderate with an average pain score of 5/10. Eighty-two (64%) participants were having regular BoNT injections, with overall positive perceived effects. Common activities reported to improve the symptoms were the use of heat packs, massage, relaxation, physiotherapy and participation in general exercise. Common coping strategies reported were getting sufficient rest, having the support of friends and family, and remaining engaged in enjoyable hobbies. We found that most participants received regular BoNT injections and that heat packs, exercise, massage, physiotherapy and relaxation were mostly perceived as effective in reducing the symptoms of cervical dystonia.

The barriers and facilitators to satisfaction with botulinum neurotoxin treatment in people with cervical dystonia: a systematic review.

BACKGROUND: Cervical dystonia (CD) is an isolated, focal, idiopathic dystonia affecting the neck and upper back. CD is usually treated by botulinum neurotoxin (BoNT) injections into the dystonic muscles; however, about 20% of people will discontinue BoNT therapy. This systematic review aimed to determine the barriers to satisfaction and facilitators that could improve satisfaction with BoNT therapy for people with CD. METHODS: A database search for journal articles investigating satisfaction with BoNT treatment in CD identified seven qualitative studies and one randomised controlled trial. Results were grouped into "direct" and "indirect" barriers and facilitators. RESULTS: The most reported direct barrier to satisfaction with BoNT was treatment non-response, reported by up to 66% of participants. Other direct barriers included negative side effects, early wearing-off of treatment effect and inexperience of the treating physician. Indirect barriers included limited accessibility to treatment (including cost) and personal choice. Direct facilitators of satisfaction with BoNT included relief of symptoms and flexible re-treatment intervals. Indirect facilitators included easy accessibility to treatment. CONCLUSIONS: Despite BoNT having a discontinuation rate of only 20%, it appears a much greater proportion of people with CD are dissatisfied with this treatment. As BoNT is currently the main treatment offered to people with CD, efforts to improve treatment response rates, reduce side effects and make treatment more flexible and readily available should be adopted to improve the quality of life for people with CD.

Active exercise for individuals with cervical dystonia: a pilot randomized controlled trial.

OBJECTIVE: To investigate the feasibility and effectiveness of an active exercise program for cervical dystonia. DESIGN: Pilot randomized controlled, single-blind trial of a 12-week intervention followed by a four-week follow-up period. SETTING: Supervised physiotherapy and outcome measurement sessions were conducted in a hospital outpatient physiotherapy setting. Participants also performed exercises at home. SUBJECTS: Twenty participants with idiopathic cervical dystonia were randomized into an experimental (n = 9) or control (n = 11) group. Two participants from the experimental group and one from the control group dropped out. INTERVENTIONS: The experimental group undertook a semi-supervised active exercise program aimed at correcting the dystonic head position, plus relaxation. The control group performed relaxation only. MAIN OUTCOME MEASURES: Feasibility of the intervention was assessed by recording adherence, muscle soreness, and adverse events. The primary outcome measure was blinded analysis of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) score. RESULTS: The active exercise program was feasible and safe, with participants in the experimental group completing 84% of prescribed training sessions in the 12-week intervention period. There were no adverse events in either group, while mild muscle soreness was reported by 66% of the experimental group. There was no significant difference between groups at post-test or follow-up. The difference between groups of -1.9 (95% confidence interval (CI) -9.0-5.2) on the TWSTRS demonstrates a trend towards greater improvement for the experimental group. CONCLUSION: Active exercise for people with cervical dystonia is feasible and can be completed with good adherence and no adverse effects.

A survey of falls in people with dystonia.

OBJECTIVE: Dystonia is a chronic and sometimes progressive neurological disorder causing abnormalities in movement and function. We conducted a preliminary survey to investigate whether people with dystonia experience falls and to identify contributing factors to falls in this population. METHODS: An online survey of people with dystonia was conducted in November 2015. Respondents were asked to complete demographic information, three questionnaires (the Falls Self-Efficacy Scale International [FES-I], the Activities-based Balance Confidence Scale [ABC] and the Functional Disability Questionnaire [FDQ]), and to report any falls sustained during the previous 6 months. RESULTS: Thirty-nine percent of the 122 respondents reported falling in the previous 6 months and 65% of fallers were diagnosed with dystonia not affecting the lower limbs. Fallers reported lower falls self-efficacy and balance confidence with higher functional disability. Both falling scales correlated with self-reported functional disability. Linear regression analysis for falls prediction revealed the variables FES-I and FDQ accounted for almost 30% of the falls in this dystonia population. CONCLUSION: This survey indicates that fear of falling and balance confidence are impaired in people with dystonia, possibly impacting on function and falls. Further investigation into balance, function and falls in this population is required.

The Toronto Western Spasmodic Torticollis Rating Scale: reliability in neurologists and physiotherapists.

INTRODUCTION: Inter-rater reliability for the Toronto Western Spasmodic Torticollis Rating Scale has been determined for neurologists, but not for physiotherapists. We assessed the inter-rater reliability of scoring the clinical severity subscale of the Toronto Western Spasmodic Torticollis Rating Scale by two physiotherapists and two neurologists. METHODS: Seven individuals with cervical dystonia were assessed on video a total of 23 times. The assessments were randomized and rated by all raters. RESULTS: Reliability for all raters considered together, assessed by the Intraclass Correlation Coefficient (ICC 2,1) was 0.74 (p < 0.001, 95% CI 0.46-0.88). Reliability for the two clinician groups was not significantly different: neurologists ICC (2,1) = 0.75 (p < 0.001, 95% CI 0.44-0.89), physiotherapists ICC (2,1) = 0.82 (p < 0.001, 95% CI 0.30-0.94). CONCLUSION: The clinical severity subscale of the Toronto Western Spasmodic Torticollis Rating Scale can be assessed with good inter-rater reliability when physiotherapists and neurologists are represented in the same rater pool.