Mobile arm supports in Duchenne muscular dystrophy: a pilot study of user experience and outcomes

Cruz, Ashlee; Callaway, Libby; Randall, Melinda; Ryan, Monique M.

doi:10.1080/17483107.2020.1749892

Cited by 14 publications

(22 citation statements)

References 37 publications

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“…This should be organized according with what a person can do (motor capability), what a person wants to do (needs and wishes), and what a person does in daily life (motor performance) [ 18 ]. However, common benefits, such as activity frequency and arm elevation, could provide initial indications of device effectiveness for essential activities, such as eating/drinking [ 15 , 36 ].…”

Section: Discussionmentioning

confidence: 99%

“…It should be realized that objective and subjective outcomes relate to different ICF domains. The multi-sensor network measures mostly the body functionality, while self-reports naturally tend to cover activity and participation [ 15 , 17 , 18 ]. Even though the ICF model components interact with each other, the measurements methods may not reflect the same aspects of DAS usage characteristics.…”

Section: Discussionmentioning

confidence: 99%

“…Approximately 7–24% of individuals with a neuromuscular disorder use dynamic arm supports (DASs) [ 3 , 4 ], which provide gravity compensation and can improve mobility and quality of life [ 5 , 6 , 7 , 8 ]. Specifically, they facilitate limb motion against gravity [ 9 , 10 , 11 , 12 , 13 , 14 ], reduce efforts [ 8 , 12 , 13 , 14 , 15 ], and improve ADL performance [ 5 , 9 , 11 , 16 ]; thus, supporting the user’s overall activity and independence [ 10 , 15 ]. Studies have shown that the intended benefits of DASs are not completely realized [ 17 , 18 ], whereas most users seem satisfied with the DAS given to them, with continuous use reported up to 17 h per day [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Daily Life Benefits and Usage Characteristics of Dynamic Arm Supports in Subjects with Neuromuscular Disorders

Essers

Murgia

Peters

et al. 2020

Sensors

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Neuromuscular disorders cause progressive muscular weakness, which limits upper extremity mobility and performance during activities of daily life. Dynamic arm supports can improve mobility and quality of life. However, their use is often discontinued over time for unclear reasons. This study aimed to evaluate whether users of dynamic arm supports demonstrate and perceive quantifiable mobility benefits over a period of two months. Nine users of dynamic arm supports were included in this observational study. They had different neuromuscular disorders and collectively used four different arm supports. They were observed for three consecutive weeks during which they were equipped with a multi-sensor network of accelerometers to assess the actual use of the arm support and they were asked to provide self-reports on the perceived benefits of the devices. Benefits were experienced mainly during anti-gravity activities and the measured use did not change over time. The self-reports provided contextual information in domains such as participation to social life, in addition to the sensor system. However self-reports overestimated the actual use by up to three-fold compared to the accelerometer measures. A combination of objective and subjective methods is recommended for meaningful and quantifiable mobility benefits during activities of daily life.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Daily Life Benefits and Usage Characteristics of Dynamic Arm Supports in Subjects with Neuromuscular Disorders

Essers

Murgia

Peters

et al. 2020

Sensors

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show abstract

“…Two articles were added after reference cross cheques. Finally, eight articles were included for reviewing after the inclusion process [18][19][20][21][22][23][24][25] ( Table 1). Two studies, ongoing until 31 December 2020 and 2019, respectively, were identified from the goverenment clinical trial source [26,27] (Table 2).…”

Section: Literature Reviewmentioning

confidence: 99%

“…The evaluated DAS were a prototype A-gear [19,28], and commercially available devices Armon Ayura [26,27,29], Armon Edero [25,29], Gowing [24,30], JAECO MultiLink Arm with Elevation Assist [25,31], JAECO WREX [21,23,26,27,31], SLING [20,22,30], and Top-Help [22,30], and a JAECO WREX modified with a trunk support prototype [18] (Table 1). These DAS provide gravity compensation through adjustable counter-weights (SLING) or springs (A-gear, Armon Edero, JAECO MultiLink Arm with Elevation Assist, JAECO WREX, Top-Help) with an additional actuator that adjusts the springs' tension (Armon Ayura, Gowing).…”

Section: Dynamic Arm Support Evaluationsmentioning

confidence: 99%

Recommendations for studies on dynamic arm support devices in people with neuromuscular disorders: a scoping review with expert-based discussion

Essers

Murgia

Peters

et al. 2020

Disability and Rehabilitation: Assistive Technology

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Purpose: Neuromuscular disorders are characterised by muscle weakness that limits upper extremity mobility, but can be alleviated with dynamic arm support devices. Current research highlights the importance and difficulties of evidence-based recommendations for device development. We aim to provide research recommendations primarily concerning upper extremity body functions, and secondarily activity and participation, environmental and personal factors. Methods: Evidence was synthesised from literature, ongoing studies, and expert opinions and tabulated within a framework based on a combination of the International Classification of Functioning, Disability and Health (ICF) model and contextual constructs. Results: Current literature mostly investigated the motor capacity of muscle function, joint mobility, and upper body functionality, and a few studies also addressed the impact on activity and participation. In addition, experts considered knowledge on device utilisation in the daily environment and characterising the beneficiaries better as important. Knowledge gaps showed that ICF model components and contextual constructs should be better integrated and more actively included in future research. Conclusions: It is recommended to, first, integrate multiple ICF model components and contextual constructs within one study design. Second, include the influence of environmental and personal factors when developing and deploying a device. Third, include short-term and long-term measurements to monitor adaptations over time. Finally, include user satisfaction as guidance to evaluate the device effectiveness. ä IMPLICATIONS ON REHABILITATION Synthesized evidence will support future research and development of dynamic arm supports. Tabulated evidence stresses the importance of integrating ICF model components and contextual constructs to fill the knowledge gaps. Presented knowledge gaps and proposed steps guide the set up of future studies on dynamic arm supports ARTICLE HISTORY

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All hands on deck: The multidisciplinary rehabilitation assessment and management of hand function in persons with neuromuscular disorders

O'Connell,

Guo,

Soucy

et al. 2024

Muscle and Nerve

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Hand function is important in every aspect of our lives. Across a wide range of neuromuscular disorders—inherited ataxias, motor neuron diseases, polyneuropathies, and myopathies—people can experience losses in hand strength, tone, movement, dexterity, joint range, and sensation. Such changes can adversely affect function and independence in daily activities, reducing participation and quality of life. People with neuromuscular disorders (pwNMD) known to involve the hand should be assessed at regular intervals for changes both clinically and using impairment, performance, function, and patient‐reported outcome measures as appropriate. A patient‐centered approach to management is recommended, with clinicians partnering with the individual, their caregivers and the interprofessional teams to create personalized solutions that can overcome barriers to participation and best meet the goals of individuals affected by neuromuscular disorders. Management strategies should be multifaceted, and may include exercise, orthoses, assistive devices, technological solutions, environmental or task adaptations, medications, and/or surgery. Exercise recommendations and orthoses should be individualized and evolve based on disease progression, impairments, and functional limitations. While medications and surgery have a small role for specific clinical situations, there is a plethora of assistive and technological solutions to assist with basic and instrumental activities of daily living, work/education, and leisure for pwNMD with reduced hand function. In addition, clinicians should advocate for appropriate accommodations for reduced hand function at work/school, and the development of and adherence to legislation supporting accessibility and inclusion.

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Mobile arm supports in Duchenne muscular dystrophy: a pilot study of user experience and outcomes

Cited by 14 publications

References 37 publications

Daily Life Benefits and Usage Characteristics of Dynamic Arm Supports in Subjects with Neuromuscular Disorders

Daily Life Benefits and Usage Characteristics of Dynamic Arm Supports in Subjects with Neuromuscular Disorders

Recommendations for studies on dynamic arm support devices in people with neuromuscular disorders: a scoping review with expert-based discussion

All hands on deck: The multidisciplinary rehabilitation assessment and management of hand function in persons with neuromuscular disorders

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