The Warwick Dystonia Self Management Study. Version 1.0
Research type
Research Study
Full title
The Warwick Dystonia Self Management Study (WADDS).
IRAS ID
157556
Contact name
Harbinder Sandhu
Contact email
Sponsor organisation
Universtiy of Warwick
Research summary
Warwick Dystonia Self-Management Study (WADSS).
Dystonia is medically defined as a heterogeneous, neurological movement disorder which can cause spasms and tremors as a result of incorrect electrical signals transmitted from the Basal Ganglia in the brain. Common prescribed treatments for patients living with dystonia typically include pharmaceutical or surgical methods which try and relieve spasms in the affected muscle(s) or reduce the incidence of incorrect brain signalling. Yet, as a result of the visible and painful symptoms often associated with living with dystonia, psychological factors such as anxiety and low mood may also accompany patients’ experience. Consequently, the research study intends to investigate the feasibility of delivering a combined psychological approach using principles of cognitive behavioural therapy (CBT) and mindfulness intervention to help participants self-manage their dystonia.
Several members from the West Midlands dystonia support group were consulted about their experiences of dystonia and the treatments they use to manage their disability. The discussions with support group members indicated that very few treatments are currently available for supporting patients with the psycho-emotional aspects of living with dystonia. Therefore, the feasibility study, funded by The Dystonia Society, aims to develop a psychological intervention which focuses on improving patients’ psychological well-being and self-management of dystonia. After completion of the study, the feasibility and acceptability of the intervention will be analysed, with an aim to trial the intervention on a larger population to test the effectiveness of the intervention.
Potential participants will be identified and recruited from the University Hospital Coventry and Warwickshire. Before the intervention is delivered, participants will be asked for their expectations of the intervention and their perceptions of their emotional well-being. The intervention will be delivered for three days and observations will be carried out. At one and three months follow up, participants’ will be asked to provide feedback and reflection. Participants will be invited to attend a half-day session at the University of Warwick at one month follow up to reflect on key messages from the intervention.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
14/EM/1091
Date of REC Opinion
2 Sep 2014
REC opinion
Further Information Favourable Opinion