Resources

Image Links

Home Page:

https://post.healthline.com/wp-content/uploads/2022/01/boy-physical-therapy-leg-foot-732-549-feature-thumb.jpg

Assessments:

https://www.hookedtobooks.com/best-magnifying-glass/

https://duchenneandyou.eu/what-is-duchenne-muscular-dystrophy/

https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-20375388

Interventions:

Ayura from Armon - Armon Products BV. ARMON products. (2018, December 11). Retrieved November 2, 2022, from https://www.armonproducts.com/products/ayura/

HEP Software – Exercise Content: Exercise Pro Live. Exercise Pro Live – Video exercise prescription for physical therapists. (2021, August 4). Retrieved November 2, 2022, from https://www.exerciseprolive.com/hep-software/

MediLexicon International. (n.d.). Heat and cold treatment: Which is best? Medical News Today. Retrieved November 2, 2022, from https://www.medicalnewstoday.com/articles/29108

Caregiver Resources:

https://www.rand.org/pubs/external_publications/EP68088.html

https://musculardystrophynews.com/news/in-depth-interviews-reveal-difficulties-growing-up-duchenne-md-dmd/

https://bricolagebehavioral.com/importance-of-therapy-for-kids-and-teens/

https://www.umassglobal.edu/news-and-events/blog/child-psychologist

https://westsidechildrenstherapy.com/7-important-things-pediatric-occupational-therapist/

Community Resources:

https://cen.acs.org/articles/92/i29/Help-Boys-Duchenne-Muscular-Distrophy.html image

https://fltmag.com/community-online-course/ image

References

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3. Köken, Ö. Y., Kucur, Ö., Taşkıran, C., Öztoprak, Ü., Sel, Ç. G., Aksoy, E., Aksoy, A., Yoldaş, T., & Yüksel, D. (2021). Clinical features and quality of life in Duchenne and Becker muscular dystrophy patients from a tertiary center in Turkey. Journal of Current Pediatrics / Guncel Pediatri, 19(1), 15–22. https://doi.org/10.4274/jcp.2021.0003

4. Thomas, P.T., Rajaram, P., Nalini., A. (2014). Psychosocial challenges in family caregiving with children suffering from Duchenne muscular dystrophy. Health & Social Work. 39(3), 144–152, https://doi.org/10.1093/hsw/hlu027

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19. Batra, A., Harrington, A., Lott, D. J., Willcocks, R., Senesac, C., McGehee, W., Xu, D., Mathur, S., Daniels, M. J., Rooney, W. D., Forbes, S. C., Triplett, W., Deol, J. K., Arpan, I., Bendixen, R., Finkel, R., Finanger, E., Tennekoon, G., Byrne, B., Russman, B., Sweeney, L. H., Walter, G, & Vandenborne, K. (2019). Two-Year longitudinal changes in lower limb strength and its relation to loss in function in a large cohort of patients with Duchenne muscular dystrophy. Am J Phys Med Rehabil, 97(10), 734-740. doi:10.1097/PHM.0000000000000957.

20. Nätterlund, B., Gunnarsson, L. G., & Ahlström, G. (2000). Disability, coping and quality of life in individuals with muscular dystrophy: A prospective study over five years. Disability and Rehabilitation, 22(17), 776–785. https://doi.org/10.1080/09638280050200278

21. Lins, L. & Carvalho, F. M. (2016). SF-36 total score as a single measure of health-related quality of life: Scoping review. SAGE Open Med. doi: 10.1177/2050312116671725.

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23. Mah, J. K., Thannhauser, J. E., Kolski, H., & Dewey, D. (2008). Parental stress and quality of life in children with neuromuscular disease. Pediatric Neurology, 39(2), 102–107. https://doi.org/10.1016/j.pediatrneurol. 04.011

24. Iannaccone, S. T., Hynan, L. S., Morton, A., Buchanan, R., Limbers, C. A., Varni, J. W., & AmSMART Group. (2009). The PedsQL in pediatric patients with Spinal Muscular Atrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscular Disorders: NMD, 19(12), 805–812. https://doi.org/10.1016/j.nmd.2009.09.009

25. Davis, S. E., Hynan, L. S., Limbers, C. A., Andersen, C. M., Greene, M. C., Varni, J. W., & Iannaccone, S. T. (2010). The PedsQL in pediatric patients with Duchenne muscular dystrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales. Journal of Clinical Neuromuscular Disease, 11(3), 97–109. https://doi.org/10.1097/CND.0b013e3181c5053b

26. Parent Project Muscular Dystrophy. (2022). Occupational Therapy. https://www.parentprojectmd.org/care/care-guidelines/by-area/physical-therapy-and-stretching/occupational-therapy/

27. Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R. (2007). Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology, 68(13), 1051–1057. https://doi.org/10.1212/01.wnl.0000257819.47628.41

28. Sansone, V. A., Panzeri, M., Montanari, M., Apolone, G., Gandossini, S., Rose, M. R., Politano, L., Solimene, C., Siciliano, G., Volpi, L., Angelini, C., Palmieri, A., Toscano, A., Musumeci, O., Mongini, T., Vercelli, L., Massa, R., Panico, M. B., Grandi, M., & Meola, G. (2010). Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases. European Journal of Neurology, 17(9), 1178–1187. https://doi.org/10.1111/j.1468-1331.2010.02992.x

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33. Amtmann, D., Liljenquist, K. S., Bamer, A., Gammaitoni, A. R., Aron, C. R., Galer, B. S., & Jensen, M. P. (2020). Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions. Quality of Life Research, 29(5), 1361–1371. https://doi.org/10.1007/s11136-019-02409-0

34. Landfeldt, E., Mayhew, A., Eagle, M., Lindgren, P., Bell, C. F., Guglieri, M., Straub, V., Lochmüller, H., & Bushby, K. (2015). Development and psychometric analysis of the Duchenne muscular dystrophy Functional Ability Self-Assessment Tool (DMDSAT). Neuromuscular disorders: NMD, 25(12), 937–944. https://doi.org/10.1016/j.nmd.2015.09.012

35. White, M. K., Leffler, M., Rychlec, K., Jones, C., McSherry, C., Walker, L., & Kosinski, M. (2019). Adapting traditional content validation methods to fit purpose: An example with a novel video assessment and training materials in Duchenne muscular dystrophy (DMD). Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 28(11), 2979–2988. https://doi.org/10.1007/s11136-019-02245-2

36. Phillips, Q. (2020, July 10). Support and resources for duchenne muscular dystrophy. Everyday Health. https://www.everydayhealth.com/genetic-diseases/support-and-resources-for-duchenne-muscular-dystrophy/

37. Nishizawa, H., Matsukiyo, A., Shiba, N., Koinuma, M., & Nakamura, A. (2018). The effect of wearing night splints for one year on the standing motor function of patients with Duchenne muscular dystrophy. Journal of Physical Therapy Science, 30(4), 576–579. https://doi.org/10.1589/jpts.30.576

38. Kim, A., Park, M., Shin, H.-I. (2022). Pain characteristics among individuals with Duchenne muscular dystrophy according to their clinical stage. BMC Musculoskeletal Disorders, 23(1). doi: 10.1186/s12891-022-05504-5.

39. Gillis, C., & Carli, F. (2021). Patients with poor functional walking capacity experience significantly more medical complications post-colorectal surgery than those with higher functional walking capacity. European Journal of Surgical Oncology, 47(5), 1230–1231. https://doi.org/10.1016/j.ejso.2021.02.023

40. Sherief, A. E. A. A., Abd ElAziz, H. G., & Ali, M. S. (2021). Efficacy of two intervention approaches on functional walking capacity and balance in children with Duchene muscular dystrophy. Journal of Musculoskeletal & Neuronal Interactions, 21(3), 343-350.

41. Morris, E. H., Estilow, T., Glanzman, A. M., Cusack, S. V., & Yum, S. W. (2020). Improving temporomandibular range of motion in people with Duchenne muscular dystrophy and spinal muscular atrophy. The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association, 74(2), 7402205080p1–7402205080p10. https://doi.org/10.5014/ajot.2020.030825

42. Longatelli, V., Antonietti, A., Biffi, E., Diella, E., D’Angelo, M. G., Rossini, M., Molteni, F., Bocciolone, M., Pedrocchi, A., & Gandolla, M. (2021). User-centered assistive system for arm functions in neuromuscular subjects (useful): A randomized controlled study. Journal of NeuroEngineering and Rehabilitation, 18(1). https://doi.org/10.1186/s12984-020-00794-z