Reliability Study of a Motor Function Measure Digitalized Playful Completion Modules

Completed

Brief Summary: Neuromuscular diseases include more than 200 rare disorders affecting muscles or the nervous system. Functional scales assessing motor function are tools allowing to measure the evolution of motor impairment of patients with a neuromuscular disease. They are frequently used as main outcome measures in clinical trials which are currently in full development thanks to advances in genetic and drug researches.

Among the available scales, the Motor Function Measure (MFM), a scale consisting of 32 items, had shown good metrological properties in terms of validity, reliability and sensitivity to change, regardless of the diagnosis and extent of motor impairment.

By exploring the potential of digital technologies applied to MFM, investigators created a completion module composed of animations with different playful and informative scenarios displayed on a digital tablet.

The main purpose of this project is to conduct a multicentre study to assess reliabilities of the MFM completed using the MFM-Play.

Expected benefits of this project are to improve the experience and the participation of the children to who is often imposed multiple assessments during the numerous follow-up visits of clinical trials, while maintaining good metrological properties of the MFM.

Recruitment & Eligibility

Inclusion Criteria

Patients with a neuromuscular disease confirmed by the clinic, electroneuromyography (ENMG), biology, muscular biopsy, or genetic
aged ≥ 2 yo and ≤ 60 yo
having been informed and not objecting to participating in the study (information and non-opposition of parents/holders of parental authority for minor patients)

Exclusion Criteria

participating in other interventional research with an exclusion period that is still ongoing or that may interfere with the results of this study
having had surgery or illness impacting their motor function within the last 6 months
having understanding and/or behavioral deficiencies preventing rigorous assessment
Patient placed under legal protection (this includes guardianship, curatorship and safeguard of justice)

Arm && Interventions

Group	Intervention	Description
MFM-Play	Items completion with or without a MFM-Play	Neuromuscular disease patients completed MFM using MFM-Play

Primary Outcome Measures

Name	Time	Method
Comparison of item scoring between 2 MFM completion.	3 months	Level of agreement between MFM item scores reported by physiotherapists during 2 different MFM completion using the MFM-Play. Level of agreement between MFM item scores reported by a same physiotherapist during a MFM completion using the MFM-Play and a MFM completed conventionally.

Secondary Outcome Measures

Name	Time	Method

Locations (10): ESEAN - APF France Handicap
🇫🇷
Nantes, France
Centre de référence maladies neuromusculaires Hôpital Morvan - CHRU de Brest
🇫🇷
Brest, France
Service de Rééducation Fonctionnelle Pédiatrique - L'Escale - Hôpital Femme Mère Enfant, Hospices Civils de Lyon
🇫🇷
Bron, France
Service de Médecine Physique et de Réadaptation Pédiatrique Hôpital Couple-Enfant CHU de Grenoble
🇫🇷
La Tronche, France
Centre de référence maladies neuromusculaires Hôpital Salengro CHU Lille
🇫🇷
Lille, France
Consultation pluridisciplinaire MNM adulte Hôpital de la Croix Rousse, Groupement Hospitalier Nord HCL
🇫🇷
Lyon, France
Consultation de pédiatrie- maladie neuromusculaire Hôpital Armand Trousseau APHP
🇫🇷
Paris, France
Centre de référence MNM Adulte Saint Etienne - service neurologie CHU Hôpital Nord
🇫🇷
Saint-Priest-en-Jarez, France
Service de Médecine Physique et de Réadaptation Pédiatrique Hôpital Bellevue CHU Saint Etienne
🇫🇷
Saint-Étienne, France
Centre de référence des maladies neuromusculaires enfants Hôpital des enfants CHU de Toulouse
🇫🇷
Toulouse, France