Protocol for the comprehensive and ecological neurorehabilitation of the pediatric population with Duchenne Muscular Dystrophy of the pediatric population with Duchenne Muscular Dystrophy
DOI:
https://doi.org/10.28957/rcmfr.442Keywords:
Neurological rehabilitation, Duchenne muscular dystrophy, uality of life, social participation, clinical protocolsAbstract
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.
References
Guapi VH, García JR. Distrofia muscular de Duchenne: reportes de caso. Universitas Médica. 2017;58(4):1-6. Disponible en: https://doi.org/10.11144/Javeriana.umed58-4.duch.
Carter JC, Sheehan DW, Prochoroff A, Birnkrant DJ. Muscular Dystrophies. Clin Chest Med. 2018;39(2):377-89. Disponible en: https://doi.org/10.1016/j.ccm.2018.01.004.
Lombardo ME, Carraro E, Sancricca C, Armando M, Catteruccia M, Mazzone E, et al. Management of motor rehabilitation in individuals with muscular dystrophies. 1st Consensus Conference report from UILDM - Italian Muscular Dystrophy Association (Rome, January 25-26, 2019). Acta Myol. 2021;40(2):72-87. Disponible en: https://doi.org/10.36185/2532-1900-046.
American Occupational Therapy Asociation. Occupational therapy practice framework: Domain and process. 4th ed. American Journal of Occupational Therapy. 2020;74(Suppl 2):7412410010. Disponible en: https://doi.org/10.5014/ajot.2020.74S2001.
Darmahkasih AJ, Rybalsky I, Tian C, Shellenbarger KC, Horn PS, Lambert JT, et al. Neurodevelopmental, behavioral, and emotional symptoms common in Duchenne muscular dystrophy. Muscle Nerve. 2020;61(4):466-74. Disponible en: https://doi.org/10.1002/mus.26803.
Toussaint M, Davidson Z, Bouvoie V, Evenepoel N, Haan J, Soudon P. Dysphagia in Duchenne muscular dystrophy: practical recommendations to guide management. Disabil Rehabil. 2016;24;38(20):2052-62. Disponible en: https://doi.org/10.3109/09638288.2015.1111434.
Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251-67. Disponible en: https://doi.org/10.1016/S1474-4422(18)30024-3.
Guzmán-Jiménez Y, Herrera-Marmolejo D, Medina-Rodríguez AM, Pedraza-Vargas SF, Robles-Duran M, Suarez-Bohórquez Y. Ecological Validity in Pediatric Neurorehabilitation. International Jornal of Health Science. 2023;3(52):2-8. Disponible en: https://doi.org/10.22533/at.ed.1593522310071.
García-Molina A, Tirapu-Ustárroz J, Roig-Rovira T. Validez ecológica en la exploración de las funciones ejecutivas. Anales de Psicología. 2007 [citado julio 10 de 2024];23(2):289-99. Disponible en: https://revistas.um.es/analesps/article/view/22251/21531.
Aldana-Casas AM, Pedraza-Vargas SF, López-Hernández KG. Diseño de un protocolo con validez ecológica para la detección temprana de riesgo neurológico en población pediátrica de la primera infancia. Rev Colomb Med Fis Rehab. 2023;33(1):25-40. Disponible en: https://doi.org/10.28957/rcmfr.372.
Pedraza-Vargas SF, Vélez-Jiménez D. Neurociencias Sociales: principios epistemológicos. Espergesia. 2023;10(1):66-75. Disponible en: https://doi.org/10.18050/rev.espergesia.v10i1.2520.
Hamui-Sutton A. Un acercamiento a los métodos mixtos de investigación en educación médica. Investigación Educ Médica. 2013;2(8):211-6.
Escobar-Pérez J, Cuervo-Martinez Á. Validez de contenido y juicio de expertos: una aproximación a su utilización. Av en Medición. 2008;6:27-36. Disponible en: https://doi.org/10.1016/S2007-5057(13)72714-5.
Schmuckler MA. What Is Ecological Validity? A Dimensional Analysis. Infancy. 2001;2(4):419-36. Disponible en: https://doi.org/10.1207/S15327078IN0204_02.
de Freitas BL, da Silva TD, Crocetta TB, Massetti T, de Araújo LV, Coe S, et al. Analysis of Different Device Interactions in a Virtual Reality Task in Individuals With Duchenne Muscular Dystrophy—A Randomized Controlled Trial. Front Neurol. 2019;10:24. Disponible en: https://doi.org/10.3389/fneur.2019.00024/full.
Miliani-Capelini C, da Silva TD, Tonks J, Watson S, Boscolo-Alvarez MP, Del Ciello-de Menezes L, et al. Improvements in motor tasks through the use of smartphone technology for individuals with Duchenne muscular dystrophy. Neuropsychiatr Dis Treat. 2017;13:2209-17. Disponible en: https://doi.org/10.2147/NDT.S125466.
Alemdaroğlu I, Karaduman A, Yilmaz ÖT, Topaloğlu H. Different types of upper extremity exercise training in Duchenne muscular dystrophy: Effects on functional performance, strength, endurance, and ambulation. Muscle Nerve. 2015;51(5):697-705. Disponible en: https://doi.org/10.1002/mus.24451.
Güneş-Gencer GY, Yilmaz Ö. The effect of trunk training on trunk control, upper extremity, and pulmonary function in children with Duchenne muscular dystrophy: A randomized clinical trial. Clin Rehabil. 2022;36(3):369-78. Disponible en: https://doi.org/1177/02692155211043265.
Brandão L de C, Furtado MA dos S, Oliveira VN de S, Arêas GPT, Mendonça ASGB. Efeito da intervenção motora domiciliar centrada na família para a funcionalidade de indivíduos com Duchenne. Saúde Debate. 2022;46(Especial 5):136-47. Disponible en: https://doi.org/10.1590/0103-11042022E512.
Lott DJ, Taivassalo T, Cooke KD, Park H, Moslemi Z, Batra A, et al. Safety, feasibility, and efficacy of strengthening exercise in Duchenne muscular dystrophy. Muscle Nerve. 2021;63(3):320-6. Disponible en: https://doi.org/10.1002/mus.27137.
Sherief AEA, Abd ElAziz HG, Ali MS. Efficacy of two intervention approaches on functional walking capacity and balance in children with Duchene muscular dystrophy. J Musculoskelet Neuronal Interact. 2021;21(3):343-50.
Carroll K, Yiu EM, Ryan MM, Kennedy RA, de Valle K. The effects of calf massage in boys with Duchenne muscular dystrophy: a prospective interventional study. Disabil Rehabil. 2021;43(26):3803-9. Disponible en: https://doi.org/10.1080/09638288.2020.1753829.
Aydin-Yağcioğlu G, Alemdaroğlu-Gürbüz İ, Karaduman A, Bulut N, Yilmaz Ö. Kinesiology Taping in Duchenne Muscular Dystrophy: Acute Effects on Performance, Gait Characteristics, and Balance. Dev Neurorehabil. 2021;24(3):199-204. Disponible en: https://doi.org/10.1080/17518423.2020.1839805.
Weichbrodt J, Eriksson BM, Kroksmark AK. Evaluation of hand orthoses in Duchenne muscular dystrophy. Disabil Rehabil. 2018;40(23):2824-32. Disponible en: https://doi.org/10.1080/09638288.2017.1347721.
de Souza MA, Figueiredo MML, de Baptista CR, Aldaves RD, Mattiello-Sverzut AC. Beneficial effects of ankle-foot orthosis daytime use on the gait of Duchenne muscular dystrophy patients. Clin Biomech (Bristol, Avon). 2016;35:102-10. Disponible en: https://doi.org/10.1016/j.clinbiomech.2016.04.005.
Britton D, Karam C, Schindler JS. Swallowing and Secretion Management in Neuromuscular Disease. Clin Chest Med. 2018;39(2):449-57. Disponible en: https://doi.org/10.1016/j.ccm.2018.01.007.
van Bruggen HW, van den Engel-Hoek L, Steenks MH, van der Bilt A, Bronkhorst EM, Creugers NHJ, et al. Fighting Against Disuse of the Masticatory System in Duchenne Muscular Dystrophy: A Pilot Study Using Chewing Gum. J Child Neurol. 2015;30(12):1625-32 Disponible en: https://doi.org/10.1177/0883073815575575.
Miura T, Takami A, Makino M, Ishikawa A, Ishikawa Y. Rate of oral intake and effects of mechanical insufflation-exsufflation on pulmonary complications in patients with duchenne muscular dystrophy. J Phys Ther Sci. 2017;29(3):487-90. Disponible en: https://doi.org/10.1589/jpts.29.487.
Rojo-Rodrigues M, Fernandes-Carvalho CR, Forghieri-Santaella D, Lorenzi-Filho G, Nagahas-hi-Marie SK. Effects of yoga breathing exercises on pulmonary function in patients with Duchenne muscular dystrophy: an exploratory analysis. J Bras Pneumol. 2014;40(2):128-33. Disponible en: https://doi.org/10.1590/s1806-37132014000200005.
Rodríguez I, Fuentes C, Rivas C, Molina F, Sepúlveda C, Zenteno D. Rehabilitación respiratoria en el paciente neuromuscular: efectos sobre la tolerancia al ejercicio y musculatura respiratoria. Resultado de una serie de casos. Rev. Chil. enferm. Respir. 2013;29(4):196-203. Disponible en: https://doi.org/10.4067/S0717-73482013000400003.
Bendixen RM, Lott DJ, Senesac C, Mathur S, Vandenborne K. Participation in daily life activities and its relationship to strength and functional measures in boys with Duchenne muscular dystrophy. Disabil Rehabil. 2014;36(22):1918-23. Disponible en: https://doi.org/10.3109/09638288.2014.883444.
Hammer S, Toussaint M, Vollsæter M, Nesbjørg-Tvedt M, Drange-Røksund O, Reychler G, et al. Exercise Training in Duchenne Muscular Dystrophy: A Systematic Review and Meta-Analysis. J Rehabil Med. 2021:jrm00250. Disponible en: https://doi.org/10.2340/jrm.v53.985.
Sheehan DW, Birnkrant DJ, Benditt JO, Eagle M, Finder JD, Kissel J, et al. Respiratory Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics. 2018;142(Suppl 2):S62-71. Disponible en: https://doi.org/10.1542/peds.2018-0333H.
Veerapandiyan A, Wagner KR, Apkon S, McDonald CM, Mathews KD, Parsons JA, et al. The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID‐19 pandemic. Muscle Nerve. 2020;62(1):41-5. Disponible en: https://doi.org/10.1002/mus.26902.
Davidson ZE, Bray P, Rose K, Rodrigues MJ, Corben L, North KN, et al. Development of clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy. Disabil Rehabil. 2022;44(19):5450-67. Disponible en: https://doi.org/10.1080/09638288.2021.1936221.
Zimmermann N, Cardoso C de O, Kochhann R, Jacobsen G, Fonseca RP. Contributions of the ecological approach to the neuropsychology of executive functions. Temas Psicol. 2014;22(3):639-54. Disponible en: https://doi.org/10.9788/tp2014.3-09.
De las Heras de Pablo CG. Significado de la Terapia Ocupacional: Implicaciones para la mejor práctica.TOG (A Coruña). 2015 [citado julio 11 de 2024];7:127-45. Disponible en: https://www.revistatog.com/mono/num7/significado.pdf.
Colombia. Ministerio de Salud. Resolución 8430 de 1993 (octubre 4): Por la cual se establecen las normas científicas, técnicas y administrativas para la investigación en salud. Bogotá D.C.; octubre 4 de 1993.
The World Conferences on Research Integrity (WCRI). Declaración de Singapur sobre La Integridad En La Investigación. 2.da Conferencia Mundial sobre Integridad en la Investigación. Singapur; WCRI: 2010.
World Medical Association (WMA). WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects. Fortaleza: 64th WMA General Assembly; 2013.
Tribunal Internacional de Nüremberg. El Código de Nüremberg. Nüremberg; 1946.
Colombia. Congreso de la República. Ley 949 de 2005 (marzo 17): Por la cual se dictan normas para el ejercicio de la profesión de terapia ocupacional en Colombia, y se establece el Código de Ética Profesional y el Régimen Disciplinario correspondiente. Bogotá D.C.: Diario Oficial 45853; marzo 17 de 2005.
Colombia. Congreso de la República. Ley 376 de 1997 (julio 4): Por la cual se reglamenta la profesión de Fonoaudiología y se dictan normas para su ejercicio en Colombia. Bogotá D.C.: Diario Oficial 43079; julio 9 de 1997.
Colombia. Congreso de la República. Ley 528 de 1999 (septiembre 14): Por la cual se reglamenta el ejercicio de la profesión de fisioterapia, se dictan normas en materia de ética profesional y otras disposiciones. Bogotá D.C.: Diario Oficial 43711; septiembre 20 de 1997.
How to Cite
Downloads
Downloads
Published
Issue
Section
License
Copyright (c) 2024 Revista Colombiana de Medicina Física y Rehabilitación
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
| Article metrics | |
|---|---|
| Abstract views | |
| Galley vies | |
| PDF Views | |
| HTML views | |
| Other views | |
