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Session: Rehabilitation
Session starts: Friday 27 January, 14:00
Presentation starts: 14:45
Room: Room 530

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Suzanne Filius (Delft University of Technology)
Jaap Harlaar (Delft University of Technology; Erasmus MC University Medical Center)
Herman van der Kooij (University of Twente)
Mariska Janssen (Radboud University Medical Center; Klimmendaal)

Abstract:
Optimizing orthotics to real user needs is a challenge in our field. A variety of upper extremity supports is available for people with severe muscle weakness, such as Duchenne Muscular Dystrophy (DMD). Unfortunately, the rate of disuse of these products is high due to multiple reasons, among which mismatch between the specific user needs and design requirements. Moreover, in the more advanced disease stages (>Brooke scale 3), there seem no suitable wearable arm support (i.e. motorized) available. This paper aims to 1) provide clinical guidance to match the technology to the patient needs, and within this framework 2) formulate functional and technical design requirements for the development of an active exoskeleton for people with DMD Brooke 4. A clinical meaningful classification was developed based on available literature over the past 1.5 years and data from the Dutch Dystrophinopathy Database (DDD) was reused. The DDD is the Dutch national register for Duchenne and Becker muscular dystrophy, in which natural history data is collected. On a functional level the muscle force/torque, active and passive range of motion, reachable workspace, and performance of upper limb (PUL) scores of boys and men with DMD Brooke scale 4 were described. With this, technical design requirements were formulated to restore arm function to achievable levels, aligned with the needs of the user. The results present the clinical characteristics of DMD patients with Brooke scale 4. Showing that their range of motion is limited to what they can reach with elbow and wrist movements. As a results of increased muscle stiffness, their joint impedance around the elbow and shoulder is elevated. The muscle strength of their arm muscles varies between 3-25 N (i.e. 0.8-9 Nm of torque). Intuitive force-based support with active weight and joint impedance compensation is expected to best match their needs. Both the shoulder and elbow should be supported and there are important safety considerations that are specific to this population. This paper can be used to make the prescription and further development of arm supports more user-centered. It is important to closely match target population to design requirements in order to prevent non-use. An active arm support with weight and joint impedance compensation is expected to best match the needs of boys and men with DMD Brooke Scale 4. In addition, (and beyond our scheme) it is important to consider the (personal and environmental) barriers that could result in non-use. We would like to thank the Duchenne Centre Netherlands (DCN) for providing us with access to the Dutch Dystrophinopathy Database (DDD). This work is part of research program Wearable Robotics (P16-05) funded by Dutch Research Council (NWO), Duchenne Parent Project, Spieren voor Spieren, Festo, Yumen Bionics, Baat Medical and the FSHD society.