RecruitingOBSERVATIONAL

Living With Guillain-Barré Syndrome as Children.

This study aims to understand the long-term experiences of children who had Guillain-Barré Syndrome (GBS) when they were younger. Researchers want to talk to children aged 10 and up who had GBS two to five years ago to learn how they remember their illness and recovery. Even though children often recover well physically from GBS, they can sometimes still have problems like tiredness, pain, anxiety, or sadness. By listening to their stories, the study hopes to find out what helps children cope and if certain things make them feel worse. The goal is to improve future care and mental health support for children affected by GBS.

At a glance

Status

Recruiting

Sponsor

University Hospital, Toulouse

Enrolment target

Start

05 May 2025

Estimated completion

01 Jun 2027

Guillain Barré Syndrome Guillain-Barré Syndrome (GBS)

What is this study about?

This study is called 'Living With Guillain-Barré Syndrome as Children.' It's for young people who had Guillain-Barré Syndrome (GBS) when they were younger, specifically between two and five years ago. GBS is a rare condition that affects the nerves, and while many children recover well physically, some might still experience ongoing problems like tiredness, pain, anxiety, or feeling down. Researchers want to understand how GBS has affected these children's lives over time.

The main idea is to listen to the children's stories. Researchers believe that by understanding their personal experiences and memories of their illness and recovery, they can learn a lot. This includes finding out if certain things might make some children feel sad or worried even years after getting better physically. They will talk to about 25 young people aged 10 or older.

Ultimately, this study hopes to shed light on the long-term emotional and psychological effects of GBS on children. The information gathered will be used to help doctors and other healthcare professionals provide better care and support to children who have GBS in the future. This could lead to new ways of helping them cope with any lasting feelings or difficulties they might have.

Key takeaways

Focuses on children's experiences after GBS.
Aims to improve future care and emotional support.
Participation involves one interview and a brief check-up.
Your privacy and choices are respected.
No new medicines are given in this study.
Helps understand long-term effects of GBS on children.

Who may be eligible?

This study is looking for children and young people who are at least 10 years old when they are interviewed. You would need to have been diagnosed with Guillain-Barré Syndrome (GBS) when you were a child, and it should have been between two and five years ago since you first got the illness. You also need to be able to speak French well enough to have a conversation.

You wouldn't be able to join if you have another nerve condition that isn't GBS, or if you have a different long-term health problem that could make it difficult to understand your experience with GBS. Also, if you have a severe learning difficulty that would make it hard to take part in an interview, then this study might not be suitable for you.

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 10 years old or older?
Did you have Guillain-Barré Syndrome (GBS) between two and five years ago?
Do you speak French well enough for a conversation?
Do you not have another major nerve or long-term health condition (other than GBS)?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll have a chat with a researcher during a regular check-up appointment. This chat, or interview, will last about 45 to 60 minutes. You'll be asked about your experiences and memories of having GBS and how you've felt since. Parents can be there too, depending on your age. The conversation will be recorded to make sure nothing is missed, but your name won't be used.

You'll also fill out a short questionnaire that asks about feelings like sadness, to see if you have any signs of low mood. An independent doctor will also do a quick check-up to see if you have any lasting physical effects from GBS. There are no medicines involved in this study. It's a one-off interview and assessment, not a long-term commitment.

Potential risks and benefits

Taking part in this study could help future children with GBS by sharing your experiences, which might lead to better care and support. There isn't much risk, but talking about past experiences might make you feel a little upset or uncomfortable, though the interviewers will be supportive. You are free to stop the interview at any point, or withdraw from the study completely, without giving a reason, and it won't affect your medical care.

Locations (2)

University Hospital of Montpellier
Verified postcode
Montpellier, France· Not yet recruiting
University Hospital Toulouse
Verified postcode
Toulouse, France· Recruiting

Common questions

What is Guillain-Barré Syndrome (GBS)?

GBS is a rare condition where your body's immune system attacks your nerves, which can cause muscle weakness and other problems.

Will my information be kept private?

Yes, all personal information will be kept confidential, and your name won't be used in any reports or discussions about the study.

Do I have to take part?

No, taking part is completely your choice. If you decide not to, it will not affect your medical care in any way.

What will happen to the results of the study?

The results will help doctors and nurses understand how to better support children with GBS and improve their care in the future.

Will I get any medicine?

No, this study doesn't involve any medication. It's all about sharing your experiences and getting a quick check-up.

How to find out more

Bastien ESTUBLIER, MD

estublier.b@chu-toulouse.fr 33 5 34 55 85 75 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.