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Revista Colombiana de Medicina Física y Rehabilitación

Print version ISSN 0121-0041On-line version ISSN 2256-5655

Abstract

HERRERA MARMOLEJO, Daniela; MEDINA RODRIGUEZ, Andrea Marcela  and  PEDRAZA VARGAS, Steve Fernando. Protocol for the comprehensive and ecological neurorehabilitation of the pediatric population with Duchenne Muscular Dystrophy. Rev Col Med Fis Rehab [online]. 2024, vol.34, n.2, 442.  Epub July 18, 2024. ISSN 0121-0041.  https://doi.org/10.28957/rcmfr.442.

Introduction.

Duchenne muscular dystrophy is the most common type of dystrophy in the pediatric population; it is characterized by progressive muscle weakness that impacts the participation and quality of life of the affected child, so its treatment requires an intervention with a comprehensive approach from neurorehabilitation.

Objective.

To design a comprehensive neurorehabilitation protocol with ecological validity for the management of the pediatric population with Duchenne muscular dystrophy.

Methods.

Mixed methodology study with a nested design. In Ring 1 (quantitative) a systematic review of the available literature on the topic was performed; In Ring 2 (qualitative), two focus groups composed of five family members and five therapists were held, and, finally, in Ring 3 (quantitative), the protocol was validated by a panel of five experts.

Results.

It was designed a protocol that presents 35 neurorehabilitation activities with different levels of complexity for execution, which can be integrated into everyday life and take into account the patient as the central axis of the process.

Conclusion.

It is considered key to develop activities from neurorehabilitation with a transversal perspective that manages to identify the needs and abilities that may be relevant for the approach of the pediatric population with Duchenne muscular dystrophy in different contexts and in which the complex meaning of the human everyday life is recognized.

Keywords : Neurological rehabilitation; Duchenne muscular dystrophy; quality of life; social participation; clinical protocols.

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