Validation of a Quality of Life Assessment Tool in Generalized Dystonodyskinetic Syndromes Treated With Continuous Electrical Neuromodulation (CEN): The Dystono-dyskinetic BrethoméSanrey Quality of Life Scale (DBS-QoLs)

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Interventional
Study Phase: Not Applicable
SUMMARY

In spite of a growing interest in the evaluation of health-related quality of life in movement's disorders management, there is no tool specifically dedicated to dystonia and related syndromes that measures both the objective severity of the handicap and the patient's feelings about the surgical treatment in terms of subjective improvement. We have been working for several years at the bedside of patients operated on in the pathologies cérébrales résistantes Unit on the development of a related questionnaire to assess both the motor severity and the patients' feelings about the evolution of their disease under Deep Brain Stimulation (DBS). The self-questionnaire designed would allow to a certain extent to get away from the two gold standards currently used in the field, i.e. the Burke, Fahn \& Marsden Dystonia Rating Scale (BFMDRS) and the SF-36, thus facilitating the evaluation and allowing a homogenization of the practices for the different implanting centers on the french territory.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Maximum Age: 80
Healthy Volunteers: f
View:

• Adulte between 18 an 80 years

• Patient with a generalized dystono-dyskinetic syndrome treated by Electrical Neuromodulation Continue and follow-up in the unit

• Subject affiliated to the French social security system

Locations
Other Locations
France
CHU Montpellier
RECRUITING
Montpellier
Time Frame
Start Date: 2023-05-24
Estimated Completion Date: 2027-01
Participants
Target number of participants: 146
Treatments
Experimental: Adults with dystono-diskinetic syndrome treated by depp brain stimulation in the unit.
Sponsors
Leads: University Hospital, Montpellier

This content was sourced from clinicaltrials.gov