title: Evaluating a novel cervical orthosis, the Sheffield Support Snood, in patients with amyotrophic lateral sclerosis/motor neuron disease with neck weakness.
abstract: Current practice and guidelines recommend the use of neck orthoses for people with amyotrophic lateral sclerosis (ALS) to compensate for neck weakness and to provide surrogate neck control. However, available options are frequently described by patients as restrictive and unsuitable and there was a need for a new device that addressed the needs of people with ALS. This project utilized a co-design process to develop a new neck orthosis that was more flexible yet supportive. Following development of a prototype device, a mixed methods cohort study was undertaken with patients and carers, in order to evaluate the new orthosis. Twenty-six patients were recruited to the study, with 20 of these completing all phases of data collection. Participants described the impact of neck weakness on their life and limitations of existing supports. Evaluation of the new orthosis identified key beneficial features: notably, increased support while providing a greater range of movement, flexibility of use, and improved appearance and comfort. In conclusion, the results of this evaluation highlight the value of this alternative option for people with ALS, and potentially other patient groups who require a neck orthosis.
authors.affiliation: a School of Health and Related Research , University of Sheffield , Sheffield .
authors.forename: Susan
authors.initials: S
authors.lastname: Baxter
authors.affiliation: b Lab4Living, Art and Design Research Centre , Sheffield Hallam University , Sheffield .
authors.forename: Heath
authors.initials: H
authors.lastname: Reed
authors.affiliation: c Barnsley Hospital NHS Foundation Trust , Barnsley .
authors.forename: Zoë
authors.initials: Z
authors.lastname: Clarke
authors.affiliation: c Barnsley Hospital NHS Foundation Trust , Barnsley .
authors.forename: Simon
authors.initials: S
authors.lastname: Judge
authors.affiliation: d Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield .|e NIHR Devices for Dignity Healthcare Technology Co-operative , Sheffield .
authors.forename: Nicola
authors.initials: N
authors.lastname: Heron
authors.affiliation: d Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield .|e NIHR Devices for Dignity Healthcare Technology Co-operative , Sheffield .
authors.forename: Avril
authors.initials: A
authors.lastname: Mccarthy
authors.affiliation: b Lab4Living, Art and Design Research Centre , Sheffield Hallam University , Sheffield .
authors.forename: Joe
authors.initials: J
authors.lastname: Langley
authors.affiliation: b Lab4Living, Art and Design Research Centre , Sheffield Hallam University , Sheffield .
authors.forename: Andrew
authors.initials: A
authors.lastname: Stanton
authors.affiliation: d Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield .|e NIHR Devices for Dignity Healthcare Technology Co-operative , Sheffield .
authors.forename: Oliver
authors.initials: O
authors.lastname: Wells
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , and.
authors.forename: Gill
authors.initials: G
authors.lastname: Squire
authors.affiliation: g South Yorkshire Motor Neurone Disease Association , Sheffield , UK.
authors.forename: Ann
authors.initials: A
authors.lastname: Quinn
authors.affiliation: a School of Health and Related Research , University of Sheffield , Sheffield .
authors.forename: Mark
authors.initials: M
authors.lastname: Strong
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , and.
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Shaw
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , and.
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: Mcdermott
mesh_terms: D000293:Adolescent; D000328:Adult; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications*; D003679:Deglutition / Q000502:physiology; D004435:Eating / Q000502:physiology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000150:complications; D018908:Muscle Weakness / Q000209:etiology* / Q000534:rehabilitation*; D009333:Neck / Q000503:physiopathology*; D009989:Orthotic Devices; D012119:Respiration; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Amyotrophic lateral sclerosis; cervical orthosis; co-design; head drop; motor neuron disease; neck orthosis; neck support; neck weakness