Validation and adherence to the use of the home exercise booklet - Duchenne muscular dystrophy
Validação e adesão ao uso de cartilha de exercícios domiciliares - distrofia muscular de Duchenne
Abstract
The present study aimed to validate the content and analyze adherence to the exercises presented in the booklet for children and adolescents with Duchenne muscular dystrophy (DMD). Nine expert judges evaluated the booklet using a questionnaire adapted in the content validation process. Fifteen children/adolescents with DMD and their caregivers reported on the quality of the material's content and adherence to its use (15 and 45 days after delivery of the booklet). Twenty-two aspects addressed in content validation received scores above the acceptable index. The majority of caregivers responded “I agree” or “I completely agree” to all items analyzed regarding the evaluation of the material. In the short term, the adherence rate was 33.3% and in the long term, 13.3%. The booklet proved to be a beneficial tool to enrich the physiotherapeutic treatment of children and adolescents with DMD. However, moderate/low adherence was observed by participants.References
Atilano-Miguel S, Barbosa-Cortés L, Ortiz-Muñiz R. Duchenne muscular dystrophy: RANK/RANKL/OPG (receptor activator of nuclear factor-kB/RANK ligand/osteoprotegerin) system and glucocorticoids. Bol. méd. Hosp. Infant. Méx. [Internet]. 2022 [cited 2022 Nov 16];79(5):275–83. https://doi.org/10.24875/bmhim.21000171.
olwicz SC, Hall JK, Moussavi-Harami F, Chen X, Hauschka SD, Chamberlain JS, et al. Gene Therapy Rescues Cardiac Dysfunction in Duchenne Muscular Dystrophy Mice by Elevating Cardiomyocyte Deoxy-Adenosine Triphosphate. JACC: Basic to Translational Science [Internet]. 2019 Nov 25;4(7):778–91. https://doi.org/10.1016/j.jacbts.2019.06.006
Iskandar K, Triono A, Sunartini, Dwianingsih EK, Indraswari BW, Kirana IR, et al. Dp71 and intellectual disability in Indonesian patients with Duchenne muscular dystrophy. PLos ONE [Internet]. 2022 Oct 31;17(10):e0276640. https://doi.org/10.1371/journal.pone.0276640
Wu WC, Bradley SP, Christie JM, Pugh JR. Mechanisms and Consequences of Cerebellar Purkinje Cell Disinhibition in a Mouse Model of Duchenne Muscular Dystrophy. The Journal of Neuroscience. 2022 Jan 21;42(10):2103–15. https://doi.org/10.1523/JNEUROSCI.1256-21.2022
Szűcs Z, Pinti É, Haltrich I, Szén OP, Nagy T, Barta E, et al. An Ultra-Rare Manifestation of an X-Linked Recessive Disorder: Duchenne Muscular Dystrophy in a Female Patient. Int. j. mol. sci. (Online). 2022 Oct 28;23(21):13076. https://doi.org/10.3390/ijms232113076
Brandsema J, Darras B. Dystrophinopathies. Seminars in Neurology. 2015 Oct 6;35(04):369–384. https://doi.org/10.1055/s-0035-1558982
Lue YJ, Chen SS, Lu YM. Quality of life of patients with Duchenne muscular dystrophy: from adolescence to young men. Disabil. rehabil. [Internet]. 2017;39(14):1408–1413. https://doi.org/10.1080/09638288.2016.1196398
Landfeldt E, Thompson R, Sejersen T, McMillan HJ, Kirschner J, Lochmüller H. Life expectancy at birth in Duchenne muscular dystrophy: a systematic review and meta-analysis. Eur. j. epidemiol. 2020 Feb 27;35(7):643-653. https://doi.org/10.1007/s10654-020-00613-8
Rodrigues MR, Carvalho CRF, Santaella DF, Lorenzi-Filho G, Marie SKN. Effects of yoga breathing exercises on pulmonary function in patients with Duchenne muscular dystrophy: an exploratory analysis. J. bras. pneumol: Publicação Oficial da Sociedade Brasileira de Pneumologia e Tisilogia [Internet]. 2014 [cited 2023 Mar 18];40(2):128–133. https://doi.org/10.1590/S1806-37132014000200005
Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. The Lancet Neurology [Internet]. 2010 Jan;9(1):77–93. https://doi.org/10.1016/S1474-4422(09)70271-6
Voorn EL, Koopman FS, Nollet F, Brehm MA. Individualized Aerobic Exercise in Neuromuscular Diseases: A Pilot Study on the Feasibility and Preliminary Effectiveness to Improve Physical Fitness. Phys. ther. 2020 Dec 16;101(3). https://doi.org/10.1093/ptj/pzaa213
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 Dec 2;54. https://doi.org/10.2340/jrm.v53.985
Numan Bulut, Ayşe Karaduman, İpek Alemdaroğlu-Gürbüz, Yilmaz Ö, Haluk Topaloglu, Levent Özçakar. The effect of aerobic training on motor function and muscle architecture in children with Duchenne muscular dystrophy: A randomized controlled study. Clin. rehabil. 2022 Apr 20;36(8):1062–1071. https://doi.org/10.1177/02692155221095491
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. The Lancet Neurology [Internet]. 2018 Mar;17(3):251–267. https://doi.org/10.1016/S1474-4422(18)30024-3
Araujo APQC, Nardes F, Fortes CPDD, Pereira JA, Rebel MF, Dias CM, et al. Brazilian consensus on Duchenne muscular dystrophy. Part 2: rehabilitation and systemic care. Arq. Neuropsiquiatr. [Internet]. 2018 Jul;76(7):481–489. https://doi.org/10.1590/0004-282X20180062
Sætrang T, Bjørk IT, Capjon H, Rasmussen M. Parent–child communication and timing of interventions are challenges in the Duchenne muscular dystrophy care. Acta paediatr. 2018 Sep 3;108(3):535–540. https://doi.org/10.1111/apa.14537
Harrison TM. Family-Centered Pediatric Nursing Care: State of the Science. J. pediatr. nurs. [Internet]. 2010 Oct [cited 2019 Apr 7];25(5):335–343. https://doi.org/10.1016/j.pedn.2009.01.006
Ryan L, Logsdon MC, McGill S, Stikes R, Senior B, Helinger B, et al. Evaluation of Printed Health Education Materials for Use by Low-Education Families. J. nurs. scholarsh. 2014 Mar 5;46(4):218–228. https://doi.org/10.1111/jnu.12076
Hoffmann T, Worrall L. Designing effective written health education materials: Considerations for health professionals. Disabil. rehabil.. 2004 Oct 7;26(19):1166–1173. https://doi.org/10.1080/09638280410001724816
Franco CSB, Martins EJ, Davoli GB de Q, Petian-Alonso DC, Pereira KVR, Mattiello-Sverzut AC. Validação de conteúdo e análise da adesão ao uso da cartilha “Orientações para a Manutenção da Qualidade de Vida – Espinha Bífida” em crianças e adolescentes deambuladores e não deambuladores com espinha bífida. Rev. med. 2022 Sep 2;101(5). https://doi.org/10.11606/issn.1679-9836.v101i5e-193651
Muscular Dystrophy Association. The diagnosis and management of duchenne muscular dystrophy- a guide for families. 2018. Disponível em: https://treat-nmd.org/?s=guide+for+fam.
Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. The Lancet Neurology. 2010 Feb; 9(2):177-189. https://doi.org/10.1016/S1474-4422(09)70272-8
Carvalho EV, Hukuda ME, Favero FM, Zatz M, Berto MC. Orientação de exercícios domiciliares para pacientes com distrofia muscular. Ver Ter Man. 2010 jan-fev; 8(35): 33-38. Disponível em: https://host-client-assets.s3.amazonaws.com/files/mtprehab/tm_2010_35.pdf#page=33
Davoli GB de Q, Chaves TC, Lopes M, Martinez EZ, Sobreira CF da R, Graham HK, et al. The cross-cultural adaptation, construct validity, and intra-rater reliability of the functional mobility scale in Brazilian Portuguese for children and adolescents with spina bifida. Disability and Rehabilitation. 2021 Apr 20; 44(17):4862-4870. https://doi.org/10.1080/09638288.2021.1913650
Iwabe C, Miranda-Pfeilsticker B, Nucci A. Medida da função motora: versão da escala para o português e estudo de confiabilidade. Revista Brasileira de Fisioterapia. 2008 Oct;12(5):417–424. https://doi.org/10.1590/S1413-35552008000500012
Martins T, Ribeiro J P, Garrett C. Estudo de validação do questionário de avaliação da sobrecarga para cuidadores informais. Psicologia Saúde & Doenças [Internet]. 2003; 4(1):131-148. Disponível em: http://www.redalyc.org/articulo.oa?id=36240109
Polit DF, Beck CT. Fundamentos de pesquisa em enfermagem: avaliação de evidências para a prática da enfermagem. Porto Alegre: Artmed Editora; 2011.
Dalcin P de TR, Rampon G, Pasin LR, Ramon GM, Abrahão CL de O, Oliveira VZ de. Adesão ao tratamento em pacientes com fibrose cística. J. bras. pneumol. [Internet]. 2007 Dec 1;33(6):663–670. https://doi.org/10.1590/S1806-37132007000600009
Souza AC de, Alexandre NMC, Guirardello E de B, Souza AC de, Alexandre NMC, Guirardello E de B. Psychometric properties in instruments evaluation of reliability and validity. Epidemiol. Serv. Saúde. 2017 Jul;26(3):649–659. https://doi.org/10.5123/S1679-49742017000300022
Moura IH de, Silva AFR da, Rocha A do ES de H, Lima LH de O, Moreira TMM, Silva ARV da. Construction and validation of educational materials for the prevention of metabolic syndrome in adolescents. Rev. latinoam. enferm. 2017 Oct 5;25:e2934. https://doi.org/10.1590/1518-8345.2024.2934
Lewis S, Willis K, Bismark M, Smallwood N. A time for self-care? Frontline health workers’ strategies for managing mental health during the COVID-19 pandemic. SSM - Mental Health. 2021 Dec;2:100053. https://doi.org/10.1016/j.ssmmh.2021.100053
Sirari T, Suthar R, Singh A, Prinja S, Gupta V, Malviya M, et al. Development and economic evaluation of a patient-centered care model for children with Duchenne’s Muscular Dystrophy: A quasi-experimental study protocol (Preprint). JMIR research protocols. 2022 Sep 8;12:e42491. https://doi.org/10.2196/42491
Bachmann C, Oesch P, Bachmann S. Recommendations for Improving Adherence to Home-Based Exercise: A Systematic Review. Phys. Med. Rehabil.med. Kurortmed. 2017 Dec 18;28(01):20–31. https://doi.org/10.1055/s-0043-120527
Medina-Mirapeix F, Escolar-Reina P, Gascón-Cánovas JJ, Montilla-Herrador J, Jimeno-Serrano FJ, Collins SM. Predictive factors of adherence to frequency and duration components in home exercise programs for neck and low back pain: an observational study. BMC musculoskelet. disord. 2009 Dec;10,155. https://doi.org/10.1186/1471-2474-10-155
Santello G, Martins J, Rossi DM, Tozzo MC, Oliveira AS de. Facilitadores e barreiras para a adesão de pacientes com dor no ombro a um programa de exercícios domiciliares: estudo transversal. BrJP [Internet]. 2023 jan-mar 21; 6(1):68–74. https://doi.org/10.5935/2595-0118.20230009-pt
Leon MA de S, Sverzut ACM. Abordagem dos cuidados paliativos no atendimento de pacientes com distrofia muscular de Duchenne em um serviço de alta complexidade[tese]. Ribeirão Preto: Faculdade de Medicina de Ribeirão Preto; 2022. https://doi.org/10.11606/T.17.2023.tde-24032023-154225.
Piola TS, Pacífico AB, Bacil EDA, Silva MPD, Campos WD. Aplicativos para estimular a prática de atividade física em crianças e adolescentes brasileiros. Saude e pesqui.(Impr.), 2020 jul-set; 13(3):665-673. https://doi.org/10.17765/2176-9206.2020v13n3p665-673
Copyright (c) 2024 Saúde e Pesquisa
![Creative Commons License](http://i.creativecommons.org/l/by/4.0/88x31.png)
This work is licensed under a Creative Commons Attribution 4.0 International License.
A submissão de originais para a revista Saúde e Pesquisa implica na transferência da Carta Concessão de Direitos Autorais, pelos autores, dos direitos de publicação digital para a revista após serem informados do aceite de publicação.A Secretaria Editorial irá fornecer da um modelo de Carta de Concessão de Direitos Autorais, indicando o cumprimento integral de princípios éticos e legislação específica. Os direitos autorais dos artigos publicados nesta revista são de direito do autor, com direitos da revista sobre a primeira publicação. Os autores somente poderão utilizar os mesmos resultados em outras publicações, indicando claramente a revista Saúde e Pesquisa como o meio da publicação original. Em virtude de tratar-se de um periódico de acesso aberto, é permitido o uso gratuito dos artigos, principalmente em aplicações educacionais e científicas, desde que citada a fonte. A Saúde e Pesquisa adota a licença Creative Commons Attribution 4.0 International.
A revista se reserva o direito de efetuar, nos originais, alterações de ordem normativa, ortográfica e gramatical, com vistas a manter o padrão culto da língua e a credibilidade do veículo. Respeitará, no entanto, o estilo de escrever dos autores. Alterações, correções ou sugestões de ordem conceitual serão encaminhadas aos autores, quando necessário. Nesses casos, os artigos, depois de adequados, deverão ser submetidos a nova apreciação. As opiniões emitidas pelos autores dos artigos são de sua exclusiva responsabilidade.