Structural validity of the French version of the Child and Adolescent Scale of Participation (CASP-Fr) and factors influencing the participation of children with neuromuscular diseases

Camille de Montferrand; Marie D Morard; Laure Le Goff; Muriel Rabilloud; Marjorie Fonnesu; Christelle Pons; Teresa Gidaro; Manel Saidi; Pascal Rippert; Sylvain Roche; Carole Vuillerot

doi:10.1080/09638288.2025.2456585

Structural validity of the French version of the Child and Adolescent Scale of Participation (CASP-Fr) and factors influencing the participation of children with neuromuscular diseases

Disabil Rehabil. 2025 Jan 30:1-10. doi: 10.1080/09638288.2025.2456585. Online ahead of print.

Authors

Camille de Montferrand¹, Marie D Morard^{1

2}, Laure Le Goff^{1

3}, Muriel Rabilloud^{4

5}, Marjorie Fonnesu^{4

5}, Christelle Pons^{6

7}, Teresa Gidaro⁸, Manel Saidi¹, Pascal Rippert⁹, Sylvain Roche^{4

5}, Carole Vuillerot^{1

3}

Affiliations

¹ Service de Médecine Physique et Réadaptation Pédiatrique, Centre de référence Maladies neuromusculaires, Hospices Civils de Lyon, Hôpital Femme Mère Enfant, Bron, France.
² Équipe Dysfonction Vasculaire et Hémostase (DVH), INSERM, UMR1059 SAINBIOSE, Université de Lyon, Université Jean Monnet, Saint-Étienne, France.
³ Equipe Interraction Neurone Muscle, INMG-PGNM, CNRS UMR 5261/INSERM U1315, Université Lyon1, Lyon, France.
⁴ Service de Biostatistique-Bioinformatique, Pôle Santé Publique, Hospices Civils de Lyon, Lyon, France.
⁵ Équipe Biostatistique-Santé, Laboratoire de Biométrie et Biologie Évolutive, CNRS UMR 5558, Villeurbanne, France.
⁶ Centre de Référence Maladie Neuromusculaires, Centre Hospitalier Universitaire de Brest, Brest, France.
⁷ Rééducation Pédiatrique, Fondation ILDYS, Brest, France.
⁸ Institut de Myology, Hopital Trousseau, I-Motion, Paris, France.
⁹ Service Recherche et Epidémiologie Cliniques, Pôle Santé Publique, Hospices Civils de Lyon, Lyon, France.

PMID: 39881660
DOI: 10.1080/09638288.2025.2456585

Abstract

Purpose: (1) To examine the structural validity of the French version of the Child and Adolescent Scale of Participation (CASP-Fr) in children with neuromuscular diseases (NMD). (2) To determine the influence of demographic and clinical factors on the participation of children with NMD.

Materials and methods: We conducted an observational, cross-sectional, multicentre study in 3 centres in France. The CASP-Fr was completed by parents of children with NMD (age 3-18 years). Exploratory Factor Analysis (EFA) was performed to evaluate the structural validity. Total CASP-Fr score was used to evaluate participation and the effect of relevant clinical factors on participation was determined using multivariate analysis.

Results: We included 138 children. Median (Q1-Q3) age: 10.6 (8.0-13.1 years); median CASP-Fr total score: 88.5 (81.3-94.1). CASP-Fr evaluated the self-care, communication, mobility and advanced activities constructs of participation. Only motor function was significantly associated with participation in the multivariate analysis.

Conclusions: The CASP-Fr evaluates slightly different constructs in children with NMD than the original CASP. The participation of children with NMD was relatively high. The association with motor function suggests a major influence of the environment that should be further explored to improve the involvement in life situations of children with NMD.

Keywords: Child and Adolescent Scale of Participation; Participation; children; neuromuscular diseases; structural validity.

Plain language summary

Participation in life situations is for children with neuromuscular diseases (NMD) is similar to that of their peers.The French version of the Child and Adolescent Scale of Participation assesses participation in Self-care, Communication, Mobility and Advanced activities in children with NMD.The reasons for participation restrictions are multi-factorial in children with NMD: motor function is only moderately associated with participation.Barriers and facilitators to participation for children with NMD must be sought in the environment.