Riccardo Zuccarino1, Kirsten M Anderson2, Michael E Shy1, Jason M Wilken2. 1. Department of Neurology, The University of Iowa Carver College of Medicine, Iowa City, Iowa. 2. Department of Physical Therapy and Rehab Science, The University of Iowa Carver College of Medicine, Iowa City, Iowa.
Abstract
BACKGROUND: Ankle foot orthoses (AFOs) are commonly prescribed to individuals with Charcot-Marie-Tooth disease (CMT). The aim of this study was to evaluate patient reported satisfaction with orthotic devices and services in individuals with CMT to provide preliminary data for advancing AFO development and improving clinical care. METHODS: The Orthotics and Prosthetics Users Survey was distributed via e-mail through the Inherited Neuropathy Consortium (INC) Contact Registry and includes 11 device-specific questions and 10 service-related questions. Participants were also asked open-ended questions about their experiences with AFOs. RESULTS: Three hundred and fourteen individuals completed the survey. Over one-third of participants provided negative responses, including dislike of AFO appearance, discomfort, abrasions or irritations, and pain. Ratings of orthotic services were generally positive. CONCLUSIONS: Lower scores related to discomfort, abrasions and pain identified areas for AFO improvement. Continued research in these areas will be beneficial to informing and advancing AFO development and improving clinical care.
BACKGROUND: Ankle foot orthoses (AFOs) are commonly prescribed to individuals with Charcot-Marie-Tooth disease (CMT). The aim of this study was to evaluate patient reported satisfaction with orthotic devices and services in individuals with CMT to provide preliminary data for advancing AFO development and improving clinical care. METHODS: The Orthotics and Prosthetics Users Survey was distributed via e-mail through the Inherited Neuropathy Consortium (INC) Contact Registry and includes 11 device-specific questions and 10 service-related questions. Participants were also asked open-ended questions about their experiences with AFOs. RESULTS: Three hundred and fourteen individuals completed the survey. Over one-third of participants provided negative responses, including dislike of AFO appearance, discomfort, abrasions or irritations, and pain. Ratings of orthotic services were generally positive. CONCLUSIONS: Lower scores related to discomfort, abrasions and pain identified areas for AFO improvement. Continued research in these areas will be beneficial to informing and advancing AFO development and improving clinical care.
Authors: Gustav Jarl; Allen W Heinemann; Helen Y Lindner; Liselotte M Norling Hermansson Journal: Arch Phys Med Rehabil Date: 2015-03-21 Impact factor: 3.966
Authors: Joshua Burns; Robert Ouvrier; Tim Estilow; Rosemary Shy; Matilde Laurá; Julie F Pallant; Monkol Lek; Francesco Muntoni; Mary M Reilly; Davide Pareyson; Gyula Acsadi; Michael E Shy; Richard S Finkel Journal: Ann Neurol Date: 2012-05 Impact factor: 10.422
Authors: Katy Eichinger; Joshua Burns; Kayla Cornett; Chelsea Bacon; Mary Lohse Shepherd; Joan Mountain; Janet Sowden; Rosemary Shy; Michael E Shy; David N Herrmann Journal: Neurology Date: 2018-09-19 Impact factor: 9.910
Authors: Elizabeth Wojciechowski; Angela Y Chang; Daniel Balassone; Jacqueline Ford; Tegan L Cheng; David Little; Manoj P Menezes; Sean Hogan; Joshua Burns Journal: J Foot Ankle Res Date: 2019-02-07 Impact factor: 2.303