Myasthenia Gravis (MG) is a rare neuromuscular disease characterized by fluctuating muscle weakness and excessive fatigability. Although medical treatments have improved, MG continues to significantly impact patients' physical, emotional, and social well-being. Current care primarily focuses on symptom management, often overlooking the broader psychosocial needs of patients.
This study explores an innovative and holistic approach combining Adapted Physical Activity (APA) and Art Therapy (AT) to improve quality of life in adults with MG. The intervention includes two 6-week phases in a crossover design: one with APA alone and one combining APA with personalized AT sessions focused on body awareness, movement, and creative expression.
The investigators hypothesize that the addition of AT to a standardized APA program will significantly enhance patients' engagement and well-being, resulting in improved quality of life, reduced fatigue, and better mental health outcomes.
A total of 102 adult participants will be recruited from several hospitals in northern France (Lille, Dunkerque, Calais, Boulogne-sur-Mer, and Saint-Omer). Participants will be randomly assigned to begin with either APA alone or APA+AT. All interventions are tailored to the specific needs of MG patients and will be delivered both in person and online, depending on participant needs.
Outcomes will be evaluated using standardized questionnaires (e.g., MG-QOL15, FSS, HADS), physical performance tests (e.g., handgrip strength, sit-to-stand), and accelerometry. Qualitative data will be collected through semi-structured interviews, ethnographic observations and art based research to better understand patients' experiences.
The study has received ethical approval from the French National Ethics Committee (CPP) and involves minimal risk. Participation is voluntary, with no financial compensation. This protocol may pave the way for broader application of APA+AT models in other rare or chronic conditions that involve fluctuating fatigue and psychosocial complexity.
Confirmed diagnosis of myasthenia gravis of any form established by a referring neurologist.
Patients followed at Lille University Hospital and its partners (Neuromuscular Diseases Reference Center, hospitals of the Côte d'Opale, home care services), or at Amiens University Hospital.
No major contraindications to participating in adapted physical activity and/or art therapy, as evaluated by the medical team.
Availability to attend all 10 sessions of the APA-only program and the combined APA + AT program, according to the cross-over design.
Severe comorbidities limiting participation in adapted physical activity or art therapy.
Advanced cognitive decline or severe neuropsychiatric disorders preventing understanding and participation.
Unstable medical treatment with recent changes that may affect fatigability or physical capacity / poorly controlled myasthenia gravis.
Physical inability to participate in adapted physical activity or art therapy, even with adaptations.
Crossover
Adapted Physical Activity Only
BehavioralThis intervention consists of 10 individual Adapted Physical Activity (APA) sessions over five weeks, each lasting 45 to 60 minutes. Sessions are delivered by a trained APA instructor and focus on muscle strengthening, endurance, and body awareness. Exercises are tailored to the functional capacities and fatigability of patients living with Myasthenia Gravis. The delivery format includes a mix of in-person and remote sessions, with individualized adaptation based on patient needs.
Adapted Physical Activity + Art Therapy
BehavioralThis intervention includes 10 individualized sessions of APA integrated with movement-based Art Therapy, delivered over five weeks (45-60 minutes each). The program incorporates creative and expressive methods (e.g., role play, improvisation, dramatized movement, dramatherapy) within a therapeutic physical activity framework. It is designed to support both physical functioning and psychosocial well-being. The artistic dimension is adapted to the patients' preferences and capacities, as identified during the baseline anamnesis interview.
Change in Quality of Life (MG-QOL15)
Change in quality of life will be assessed using the Myasthenia Gravis Quality of Life 15-item questionnaire (MG-QOL15), a validated tool measuring the impact of MG on patients' physical, psychological, and social well-being. The total score ranges from 0 to 60, with higher scores indicating greater impairment. The main comparison will be between APA alone and APA + AT phases.
Change in Fatigue Severity (FSS)
Fatigue will be assessed using the Fatigue Severity Scale (FSS), a 9-item self-report questionnaire evaluating perceived fatigue and its impact on daily functioning. Higher scores indicate more severe fatigue. The comparison will be made between APA and APA+AT phases.
Change in Anxiety and Depression (HADS)
Emotional status will be assessed using the Hospital Anxiety and Depression Scale (HADS), a validated 14-item questionnaire with two subscales measuring anxiety and depression. Higher scores reflect higher psychological distress. Effects of both intervention phases will be compared.
Change in Physical Activity Level (IPAQ + Accelerometry)
Physical activity will be measured using the International Physical Activity Questionnaire (IPAQ, short form) and intermittent use of accelerometers (ActiGraph wGT3X-BT) to provide both subjective and objective measures of physical activity intensity and duration.
Change in Activities of Daily Living (MG-ADL)
Functional autonomy will be evaluated using the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale, an 8-item instrument assessing the impact of MG on daily functioning. The scale ranges from 0 (no impairment) to 24 (severe impairment).
Thematic Analysis of Semi-Structured Interviews
Participants will take part in semi-structured interviews to explore their lived experiences of illness, care, and engagement with the intervention. Interviews will be audio-recorded, transcribed, and thematically analyzed to identify psychosocial themes related to coping, self-image, and perceived benefit.
Ethnographic Observations and Field Notes
Ethnographic data will be collected through participant observation during intervention sessions, informal interviews, and field notes. Observations will focus on emotional expression, engagement, social interaction, and body language. The material will be analyzed thematically to assess the psychosocial impact of the interventions.
Drawing-Based Creative Expression Analysis
Drawing activities will be integrated into interviews as creative elicitation tools. Participants will be invited to draw representations of their illness, body image, and emotional states. These drawings will be analyzed visually and thematically to explore symbolic content and changes over time.
Identity Box-Based Narrative Analysis
Participants will be invited to bring, select or create personal objects to create "identity boxes" as part of the interviews. These objects serve as narrative anchors to facilitate reflection and storytelling. The content and associated narratives will be thematically analyzed to assess psychosocial transformation and meaning-making processes.
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Universite du Littoral Cote d'Opale
Lead sponsor
University Hospital, Lille
Collaborator
Fondation Maladies Rares (French Foundation for Rare Diseases)
Collaborator
AFM Téléthon
Collaborator
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