Abstract
BACKGROUND: Dystonia is one of the most common forms of movement disorder, caused by the co-contraction of antagonistic muscles, leading to abnormal postures and considerable disability. Non-motor symptoms, notably psychiatric disorders, are well recognised comorbid features of the disorder. However, there is no standardised model for the management of these symptoms in dystonia, with them frequently going undiagnosed and untreated. An internet-based cognitive behavioural therapy programme may provide a future model of care that also maximises available resources. METHODS: This study represents a two-armed randomised feasibility trail, aiming to recruit a total of 20 participants with a diagnosis of adult-onset primary focal cervical dystonia. Participants will be recruited from the Global Myoclonus Dystonia Registry and Dystonia Non-Motor Symptom Study (conducted at Cardiff University) based on presence of moderate symptoms of anxiety/depression as indicated by standardised questionnaires. All participants will undergo assessment at baseline, 3 and 6 months, with this including questionnaires for assessment of non-motor symptoms and clinical assessment of motor symptom severity. Participants will be randomised to either the control (n = 10) or treatment (n = 10) groups. The treatment group will be asked to complete one session of the online CBT program a week, for 8 weeks. The primary outcome measure will be the engagement of participants with the programme, with secondary outcomes of non-motor and motor symptom scores. DISCUSSION: Promising results have been shown using face-to-face cognitive behavioural therapy to reduce levels of anxiety and depression in individuals with a diagnosis of dystonia. However, no studies to date have sought to determine the feasibility of an internet-delivered cognitive behavioural therapy programme. A number of effective internet-based programmes have been developed that combat anxiety and depression in the general population, suggesting the potential for its effectiveness in cervical dystonia patients. Success with this study would significantly impact the clinical care delivery for patients with cervical dystonia, as well as widening potential access to effective treatment. TRIAL REGISTRATION: This feasibility trial has been registered with Health and Care Research Wales Research Directory. Trial registration number 44245. Date of registration: 21 November 2019. https://www.healthandcareresearch.gov.wales/research-studies-in-wales/.