Living With Guillain-Barré Syndrome as Children.

NCT06940908 | Recruiting

• 1 other identifier: RC31/24/0615
• Study Type: observational
• Target: 25
• Locations: 1 country
• Sites: 2

Brief Summary

The goal of this qualitative observational study is to explore the lived experience and psychological aftermath of children who were affected by Guillain-Barré Syndrome (GBS) two to five years earlier. GBS is a rare and acute neurological condition, and while motor recovery is generally good in children, residual symptoms such as fatigue, pain, anxiety, or depression may persist and impact quality of life. The main questions it aims to answer are: How do children experience and recall their illness and recovery after GBS? What psychological or contextual factors might contribute to emotional distress or depressive symptoms in the years following the disease? Participants will: Be children aged 10 or older who had GBS two to five years prior. Participate in a 45-60-minute semi-structured individual interview during a routine follow-up visit. Respond to a screening questionnaire for depressive symptoms (Children's Depression Inventory or Beck Depression Inventory Fast Screen). Undergo a brief clinical examination to assess any remaining physical sequelae. Interviews will be audio recorded, transcribed verbatim, and pseudonymized. Thematic reflexive analysis will be performed following Braun and Clarke's methodology. Recruitment will continue until theoretical saturation is reached (approximately 25 participants expected) across two centers (Toulouse and Montpellier). This study aims to generate new insights into pediatric psychological outcomes after GBS, in order to improve acute care and follow-up, and potentially guide future mental health support for affected children.

Conditions

Guillain Barré Syndrome; Guillain-Barré Syndrome (GBS)

Keywords

children; experience; qualitative study; quality of life

Outcome Measures

Primary Outcomes (1)

• Child's psychological and emotional experience after Guillain-Barré Syndrome

  The child's subjective experience will be assessed through a semi-structured individual interview conducted by a trained researcher. The outcome will explore psychological themes such as fear, anxiety, mood changes, body image, and coping strategies in the aftermath of Guillain-Barré Syndrome. Interviews will be recorded, transcribed verbatim, and analyzed using inductive thematic analysis. No standardized questionnaire will be used; the approach is entirely qualitative and descriptive.

  From 6 months to 5 years after the acute Guillain-Barré episode

Secondary Outcomes (1)

• Child's perception of hospitalization and medical care during Guillain-Barré Syndrome

  From 6 months to 5 years after the acute Guillain-Barré episode

Study Arms (1)

semi-structured interview

There are no intervention or comparison groups, as this is a non-interventional qualitative study. All participants will undergo a single semi-structured interview, conducted in a child-friendly and supportive setting (either in person at the hospital, or via secure video conferencing when necessary).

Eligibility Criteria

• Age: 10 Years - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Participants will be selected from the population of children and adolescents who experienced Guillain-Barré Syndrome (GBS) during childhood and received medical care at one of two university hospitals in southern France: Toulouse University Hospital and Montpellier University Hospital. Eligible participants will be aged 10 years or older at the time of the study and must be between 2 and 5 years post-acute GBS episode. The population includes individuals with sufficient command of the French language to engage in a semi-structured interview exploring the long-term psychosocial impact of GBS. Both male and female participants will be considered, provided they meet the inclusion criteria and give informed consent (or assent with parental consent for minors).

You may qualify if:

• Children or adolescents aged 10 years or older at the time of the interview
• History of Guillain-Barré syndrome (GBS) diagnosed in childhood
• Time since acute episode: between 2 and 5 years
• Sufficient mastery of the French language to participate in a semi-structured interview
• Consent of the participant and, for minors, parental consent

You may not qualify if:

• Presence of a neurological disease other than GBS that may interfere with participation or interpretation of data
• Severe cognitive impairment preventing the child or adolescent from engaging in the interview

Sponsors & Collaborators

• University Hospital, Toulouse: lead

Study Sites (2)

University Hospital of Montpellier

Montpellier, Occitanie, 34295, France

NOT YET RECRUITING

University Hospital Toulouse

Toulouse, Occitanie, 31059, France

RECRUITING

MeSH Terms

Conditions

Guillain-Barre Syndrome

Condition Hierarchy (Ancestors)

Polyradiculoneuropathy; Autoimmune Diseases of the Nervous System; Nervous System Diseases; Demyelinating Diseases; Polyneuropathies; Peripheral Nervous System Diseases; Neuromuscular Diseases; Autoimmune Diseases; Immune System Diseases; Post-Infectious Disorders; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Bastien ESTUBLIER, MD

CONTACT

33 5 34 55 85 75; estublier.b@chu-toulouse.fr

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 15, 2025
• First Posted: April 23, 2025
• Study Start: January 1, 2026
• Primary Completion (Estimated): June 1, 2027
• Study Completion (Estimated): June 1, 2027
• Last Updated: September 23, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will not share

Locations

FR (2)