Validation of a Quality of Life Assessment Tool in Adult Generalized Dystonodyskinetic Syndromes Treated by Continuous Electrical Neuromodulation
This study is looking at a new questionnaire for adults who have a specific type of movement disorder called dystono-dyskinetic syndrome and are being treated with continuous electrical stimulation (Deep Brain Stimulation or DBS). The questionnaire is designed to help understand both the physical effects of their condition and how they feel about their surgical treatment. Currently, there isn't a single tool that does both these things well. The researchers hope this new questionnaire will make it easier and more consistent for different hospitals in France to assess how patients are doing, how their symptoms improve, and how their quality of life changes after DBS. This could lead to a better overall understanding of the treatment's impact.
At a glance
What is this study about?
Imagine a new way to understand how a treatment for movement disorders affects someone's daily life. That's what this study is all about. For people with a specific type of movement disorder called dystono-dyskinetic syndrome, doctors often use a treatment called Deep Brain Stimulation (DBS), which involves continuous electrical stimulation to help manage their symptoms.
Currently, when doctors want to see how well DBS is working, they use different tools. Some focus on the physical symptoms, while others look at general quality of life. But there isn't one tool that combines both – how severe the physical problems are and how the patient personally feels about the treatment's impact on their life. The experts behind this study have been working for over ten years to create a special questionnaire designed to do exactly that. It's built to capture both the physical changes and the patient's personal experience after having DBS.
The main goal of this study is to test out this new questionnaire. They will send it to 146 adult patients in France who have had DBS for their dystono-dyskinetic syndrome. By doing this, they want to see if their new questionnaire can provide a clearer, more complete picture of a patient's journey than the methods currently used. This could eventually help doctors better understand the effects of treatment and ensure consistent care across different centres.
Key takeaways
- This study tests a new questionnaire for movement disorder treatment.
- It aims to better understand how treatment affects physical symptoms and quality of life.
- Participation involves filling out a questionnaire, with no new treatments.
- It could help doctors assess patient well-being more completely in the future.
- Only adults with specific conditions being treated with electrical stimulation are eligible.
Who may be eligible?
To be able to take part in this study, you need to be an adult between 18 and 80 years old. You must have a generalised dystono-dyskinetic syndrome, which is a type of movement disorder, and you need to be receiving continuous electrical neuromodulation treatment (like Deep Brain Stimulation or DBS) and be followed up at the specific unit running this study.
Also, you need to be a member of the French social security system. This study is taking place in France, so participants need to be connected to the French healthcare system.
There are some reasons why you wouldn't be able to join. If you don't speak French, or if you're physically unable to fill out a questionnaire and don't have someone you trust to help you, you wouldn't be able to participate. Also, if you have severe memory or thinking problems that would make it very difficult to answer the questions honestly and accurately, you wouldn't be eligible. Finally, you must willingly agree to take part in the study.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you between 18 and 80 years old?
- Do you have a generalised dystono-dyskinetic syndrome?
- Are you currently receiving continuous electrical stimulation treatment (like DBS)?
- Are you able to speak and understand French?
- Can you physically complete a questionnaire, or do you have a trusted person who can help?
- Do you feel you have good enough memory and thinking skills to answer questions accurately?
What does participation involve?
This study primarily involves completing a new questionnaire. If you're eligible and choose to take part, you will receive this questionnaire. There aren't any extra doctor's visits or new medications involved beyond your usual care. The aim is to compare your answers with information doctors already collect during your regular follow-up appointments. The total duration of your participation would be limited to the time it takes to complete and return the questionnaire.
Potential risks and benefits
Locations (1)
- CHU MontpellierVerified postcodeMontpellier, France· Recruiting
Common questions
What is dystono-dyskinetic syndrome?
It's a type of movement disorder where people experience uncontrolled or unusual muscle movements.
What is 'continuous electrical neuromodulation'?
This refers to treatments like Deep Brain Stimulation (DBS), where small electrical pulses are continuously sent to specific areas of the brain to help control movement symptoms.
Will I have to take new medicines?
No, this study only involves completing a questionnaire. You won't be given any new medications or treatments as part of this research.
How long will I be involved in the study?
Your involvement will be limited to the time it takes for you to complete and return the questionnaire.
What happens if I change my mind after joining?
You are free to withdraw from the study at any point, for any reason, without it affecting your medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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