Head-Up : co-designing novel neck orthosis for neck weakness in MND

Introduction : People with Motor Neurone Disease (MND) often develop weak neck muscles, leading to pain, restricted movement and problems with swallowing, breathing and communication. Ideally, a neck collar would help alleviate these. However, neck collars currently available are of limited use for people with MND and often rejected by patients. The same is true for patients with neck weakness due to other conditions. The Head-Up project is a 2 year study funded by the National Institute for Health Research's Invention for Innovation, or i4i, programme with a budget of £400k. Its principal aim is to develop a novel neck orthosis for neck weakness that supports whilst allowing freedom to move without negatively impacting quality of life. The research is a collaboration between clinicians, engineers, creative designers, patients and carer who will be working closely together is a co-design process. Manufacturers will be brought into this process at a later date. Ethical approval has been granted where necessary for all participatory elements. Methods The co-design process will inherently elicit subjective views. As such, prior to starting this workpackage, it was considered necessary to create a measure for this subjectivity and to give the design team a greater empathetic understanding of the inadequacies of current provision for this user group. This has been achieved by a combined clinical comfort assessment and engineering simulation. An engineering simulation of the head, neck and upper torso has been developed using Finite Element Analysis. This has been called the Neck Assessment Tool (NAT). Real body geometry was obtained via a 3D laser scan. The neck has been modelled without any structural integrity such that the head will drop without support. The body model has been meshed and constrained to represent this scenario. The geometry of different neck collar models were created in separate files and meshed. Individually they are imported into the body model, appropriate contact conditions applied and the model is processed. Each model tells the researchers where there is contact between body and collar and, relatively, the pressure of that contact. A clinical comfort assessment pilot study has been conducted using the design team members. This is based on location mapping from the McGill pain questionnaire and a Visual Analogue Scale. 5 different neck collars were identified based on common usage and distinct design differences. The members of the research team wore each collar for a day with recovery periods between. During each test period the participants recorded locations of pain/discomfort and perceptions of relative associated scales. They recorded other data relating to emotional reactions caused by the collars, impact on specific Activities of Daily Living (ADL's) and aesthetic considerations. Results The NAT has been conducted on 2 collars and the comfort assessment on 5, 2 of which are those tested in NAT. Comparisons between the comfort assessment and NAT demonstrate acceptable correlation, validating the simulation. The comfort assessment participant reporting forms have been refined and recruitment is under way to roll out to a wider population of health volunteers and use with MND volunteers to report about experiences of their specific collars as and when used. The design team reported significant differences in their perceptions of neck collars before and after the comfort assessment that will positively impact the co-design process. References 1. Ambrogio N et al, 'A Comparison of Three Types of Neck Support in Fibromyalgia Patients', Arthritis Care and Research (1998), v11, n5, pp 405-410 2. Bowen SJ, Chamberlain PM, 'Engaging the Ageing: Designing Artefacts to Provoke Dialogue', Designing Inclusive Futures (2008) Part I, 35-44, DOI: 10.1007/978-1-84800-211-1_4 3. Carlsson AM, 'Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale', Pain (1983) v16, n1, pp 87–101 4. Escalante A, Lichtenstein MJ, Lawrence VA, Roberson M, Hazuda HP, ' Where does it hurt? Stability of recordings of pain location using the McGill Pain Map', The Journal of Rheumatology (1996) v23, n10, pp 1788-93 5. Huges TJR, 'The Finite Element Method: Linear Static and Dynamic Finite Element Analysis', Inform (2000), v682, n2, p 682, Publisher: Dover Publications, ISSN: 00457825, ISBN: 0486411818 6. Latimer N, Dixon S, Mcdermott C, Shaw P, McCarthy A, Tindale W, Heron N, 'Modelling the cost effectiveness of potential new neck collar for patients with motor neurone disease', http://www.sheffield.ac.uk/scharr/sections/heds/dps-2011 7. Miller RG et al, ' Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management and cognitive/behavioural impairment(an evidence based review)', Neurology (2009), v73, pp 1218-1225 8. Motor Neurone Disease Association, 'Head Supports', www.mndassociation.org/documents.rm?id=28 9. Thumbikat P, Bailey C and Datta D, 'Orthoses for neck control', ACNR (2006) v6, pp 18-19 10. Qing Hang Zhanga, Ee Chon Teoa, Hong Wan Nga, Vee Sin Lee, 'Finite element analysis of moment-rotation relationships for human cervical spine', Journal of Biomechanics (2006), v39, n1, pp1 89–19

Decision-making in communication aid recommendations in the UK : cultural and contextual influencers

High-tech communication aids are one form of augmentative and alternative communication (AAC) intervention offered to children following an assessment process to identify the most appropriate system based on their needs. Professional recommendations are likely to include consideration of child characteristics and communication aid attributes. Recommendations may be influenced by contextual factors related to the cultural work practices and service context of professionals involved, as well as by contextual factors from the child’s life including their family environment and wider settings. The aim of this study was to explore the influence of cultural and contextual factors on the real-time decision-making processes of specialized AAC professionals in the UK. A total of six teams were recruited to the study. Each team carried out an assessment appointment related to a communication aid recommendation for a child and family. Following the appointment, each team participated in a focus group examining their decision-making processes during the preceding assessment. Inductive coding was used to analyse the transcribed data, and three organizing themes emerged relating to the global theme of Cultural and Contextual Influencers on communication aid decision-making. An explanatory model was developed to illustrate the funnelling effect that contextual factors may have on decision-making, which can substantially alter the nature and timing of a communication aid recommendation. Implications for clinical practice and future research are discussed

Professionals’ decision-making in recommending communication aids in the UK : competing considerations

Existing research suggests the provision of communication aids for children with complex communication needs can have significant positive impacts on health and quality-of-life. The process of clinical decision-making related to the recommendation of high-tech communication aids is not well documented or evaluated, and research evidence related to the provision of these aids remains limited. This study aimed to understand the factors that specialized AAC professionals in the UK consider when recommending high-tech communication aids. Purposive sampling was used to recruit teams to six focus groups, each of which centred on a team’s recent recommendation process (i.e. a discussion following a real-time assessment session, where the team attempted to arrive at an agreed recommendation for a specific child). Thematic network analysis was used to interpret data from the focus group discussions. Participants identified a wide range of child characteristics, access features, and communication aid attributes in weighing up decisions for individual children. Findings suggest that specialized AAC professionals in the UK prioritize access features over language considerations in their communication aid recommendations. An explanatory model was developed to illustrate the interaction effect that several competing considerations may have on decision-making. Implications for clinical practice and future research are discussed

High molecular weight polyproline as a potential biosourced ice growth inhibitor : synthesis, ice recrystallization inhibition, and specific ice face binding

Ice-binding proteins (IBPs) from extremophile organisms can modulate ice formation and growth. There are many (bio)technological applications of IBPs, from cryopreservation to mitigating freeze–thaw damage in concrete to frozen food texture modifiers. Extraction or expression of IBPs can be challenging to scale up, and hence polymeric biomimetics have emerged. It is, however, desirable to use biosourced monomers and heteroatom-containing backbones in polymers for in vivo or environmental applications to allow degradation. Here we investigate high molecular weight polyproline as an ice recrystallization inhibitor (IRI). Low molecular weight polyproline is known to be a weak IRI. Its activity is hypothesized to be due to the unique PPI helix it adopts, but it has not been thoroughly investigated. Here an open-to-air aqueous N-carboxyanhydride polymerization is employed to obtain polyproline with molecular weights of up to 50000 g mol–1. These polymers were found to have IRI activity down to 5 mg mL–1, unlike a control peptide of polysarcosine, which did not inhibit all ice growth at up to 40 mg mL–1. The polyprolines exhibited lower critical solution temperature behavior and assembly/aggregation observed at room temperature, which may contribute to its activity. Single ice crystal assays with polyproline led to faceting, consistent with specific ice-face binding. This work shows that non-vinyl-based polymers can be designed to inhibit ice recrystallization and may offer a more sustainable or environmentally acceptable, while synthetically scalable, route to large-scale applications

Head up ; an interdisciplinary, participatory and co-design process informing the development of a novel neck support for people living with progressive neck muscle weakness

This paper presents the Head-Up project that aims to provide innovative head support to help improve posture, relieve pain and aid communication for people living with progressive neck muscle weakness. The initial focus is motor neurone disease. The case study illustrates collaborative, interdisciplinary research and new product development underpinned by participatory design. The study was initiated by a two-day stakeholder workshop followed by early proof-of-concept modeling and patient need evidence building. The work subsequently led to a successful NIHR i4i application funding a 24-month iterative design process, patenting, CE marking and clinical evaluation. The evaluation has informed amendments to the proposed design we refer to here as the Sheffield Support Snood (SSS). The outcome positively demonstrates use and performance improvements over current neck orthoses and, the process of multidisciplinary and user engagement has created a sense of ownership by MND participants, who have since acted as advocates for the product.</p

Attributes of communication aids as described by those supporting children and young people with AAC

Background Those supporting children and young people who use augmentative and alternative communication (AAC) contribute to ongoing complex decision-making about communication aid selection and support. Little is known about how these decisions are made in practice and how attributes of the communication aid are described or considered. Aims To understand how communication aid attributes were described by those involved in AAC recommendations and support for children and young people, and how these attributes were described as impacting on AAC use. Methods & Procedures A secondary qualitative analysis was completed of interview and focus group data from 91 participants involved in the support of 22 children and young people. Attributes of communication aids described by participants were extracted as themes and this paper reports a descriptive summary of the identified software (non-hardware) attributes. Main Contribution Decisions were described in terms of comparisons between commercially available pre-existing vocabulary packages. Attributes related to vocabulary, graphic representation, consistency and intuitiveness of design, and ease of editing were identified. Developmental staging of vocabularies, core and fringe vocabulary, and vocabulary personalization were attributes that were described as being explicitly considered in decisions. The potential impact of graphic symbol choice did not seem to be considered strongly. The physical and social environment was described as the predominant factor driving the choice of a number of attributes. Conclusions & Implications Specific attributes that appear to be established in decision-making in these data have limited empirical research literature. Terms used in the literature to describe communication aid attributes were not observed in these data. Practice-based evidence does not appear to be supported by the available research literature and these findings highlight several areas where empirical research is needed in order to provide a robust basis for practice. What This Paper Adds What is already known on the subject Communication aid attributes are viewed as a key consideration by practitioners and family members in AAC decision-making; however, there are few empirical studies investigating language and communication attributes of communication aids. It is important to understand how those involved in AAC recommendations and support view communication aid attributes and the impact different attributes have. What this paper adds to existing knowledge This study provides a picture of how communication aids are described by practitioners and family members involved in AAC support of children and young people. A range of attributes is identified from the analysis of these qualitative data as well as information about how participants perceive these attributes as informing decisions. What are the potential or actual clinical implications of this work? This study provides a basis on which practitioners and others involved in AAC support for children and young people can review and reflect on their own practice and so improve the outcomes of AAC decisions. The study provides a list of attributes that appear to be considered in practice and so also provides a resource for researchers looking to ensure there is a strong empirical basis for AAC decisions

A comfort assessment of existing cervical orthoses

Purpose: identify location and intensity of discomfort experienced by healthy participants wearing cervical orthoses. Method: convenience sample of 34 healthy participants wore Stro II, Philadelphia, Headmaster, and AspenVista® cervical orthoses for four-hour periods. Participants reported discomfort level (scale 0-6) and location. Results: participants reported mean discomfort for all orthoses over the four-hour test between ‘a little discomfort’ and ‘very uncomfortable’ (mean discomfort score=1.64, SD=1.50). Seven participants prematurely stopped tests due to pain and six reported maximum discomfort scores. Significant linear increase in discomfort with duration of wear was found for all orthoses. Significantly less discomfort was reported with Stro II than Headmaster and Philadelphia. Age correlated with greater perceived discomfort. Orthoses differed in the location discomfort was experienced. Conclusion: existing cervical orthoses cause discomfort influenced by design and duration of wear with orthoses' design the more significant factor. This work informed the design of a new orthosis and future orthoses developments

Designing a course model for distance-based online bioinformatics training in Africa: the H3ABioNet experience

Africa is not unique in its need for basic bioinformatics training for individuals from a diverse range of academic backgrounds. However, particular logistical challenges in Africa, most notably access to bioinformatics expertise and internet stability, must be addressed in order to meet this need on the continent. H3ABioNet (www.h3abionet.org), the Pan African Bioinformatics Network for H3Africa, has therefore developed an innovative, free-of-charge "Introduction to Bioinformatics" course, taking these challenges into account as part of its educational efforts to provide on-site training and develop local expertise inside its network. A multiple-delivery±mode learning model was selected for this 3-month course in order to increase access to (mostly) African, expert bioinformatics trainers. The content of the course was developed to include a range of fundamental bioinformatics topics at the introductory level. For the first iteration of the course (2016), classrooms with a total of 364 enrolled participants were hosted at 20 institutions across 10 African countries. To ensure that classroom success did not depend on stable internet, trainers pre-recorded their lectures, and classrooms downloaded and watched these locally during biweekly contact sessions. The trainers were available via video conferencing to take questions during contact sessions, as well as via online "question and discussion" forums outside of contact session time. This learning model, developed for a resource-limited setting, could easily be adapted to other settings.IS

iAnn: an event sharing platform for the life sciences

Summary: We present iAnn, an open source community-driven platform for dissemination of life science events, such as courses, conferences and workshops. iAnn allows automatic visualisation and integration of customised event reports. A central repository lies at the core of the platform: curators add submitted events, and these are subsequently accessed via web services. Thus, once an iAnn widget is incorporated into a website, it permanently shows timely relevant information as if it were native to the remote site. At the same time, announcements submitted to the repository are automatically disseminated to all portals that query the system. To facilitate the visualization of announcements, iAnn provides powerful filtering options and views, integrated in Google Maps and Google Calendar. All iAnn widgets are freely available. Availability: http://iann.pro/iannviewer Contact: [email protected]

Case Reports1. A Late Presentation of Loeys-Dietz Syndrome: Beware of TGFβ Receptor Mutations in Benign Joint Hypermobility

Background: Thoracic aortic aneurysms (TAA) and dissections are not uncommon causes of sudden death in young adults. Loeys-Dietz syndrome (LDS) is a rare, recently described, autosomal dominant, connective tissue disease characterized by aggressive arterial aneurysms, resulting from mutations in the transforming growth factor beta (TGFβ) receptor genes TGFBR1 and TGFBR2. Mean age at death is 26.1 years, most often due to aortic dissection. We report an unusually late presentation of LDS, diagnosed following elective surgery in a female with a long history of joint hypermobility. Methods: A 51-year-old Caucasian lady complained of chest pain and headache following a dural leak from spinal anaesthesia for an elective ankle arthroscopy. CT scan and echocardiography demonstrated a dilated aortic root and significant aortic regurgitation. MRA demonstrated aortic tortuosity, an infrarenal aortic aneurysm and aneurysms in the left renal and right internal mammary arteries. She underwent aortic root repair and aortic valve replacement. She had a background of long-standing joint pains secondary to hypermobility, easy bruising, unusual fracture susceptibility and mild bronchiectasis. She had one healthy child age 32, after which she suffered a uterine prolapse. Examination revealed mild Marfanoid features. Uvula, skin and ophthalmological examination was normal. Results: Fibrillin-1 testing for Marfan syndrome (MFS) was negative. Detection of a c.1270G > C (p.Gly424Arg) TGFBR2 mutation confirmed the diagnosis of LDS. Losartan was started for vascular protection. Conclusions: LDS is a severe inherited vasculopathy that usually presents in childhood. It is characterized by aortic root dilatation and ascending aneurysms. There is a higher risk of aortic dissection compared with MFS. Clinical features overlap with MFS and Ehlers Danlos syndrome Type IV, but differentiating dysmorphogenic features include ocular hypertelorism, bifid uvula and cleft palate. Echocardiography and MRA or CT scanning from head to pelvis is recommended to establish the extent of vascular involvement. Management involves early surgical intervention, including early valve-sparing aortic root replacement, genetic counselling and close monitoring in pregnancy. Despite being caused by loss of function mutations in either TGFβ receptor, paradoxical activation of TGFβ signalling is seen, suggesting that TGFβ antagonism may confer disease modifying effects similar to those observed in MFS. TGFβ antagonism can be achieved with angiotensin antagonists, such as Losartan, which is able to delay aortic aneurysm development in preclinical models and in patients with MFS. Our case emphasizes the importance of timely recognition of vasculopathy syndromes in patients with hypermobility and the need for early surgical intervention. It also highlights their heterogeneity and the potential for late presentation. Disclosures: The authors have declared no conflicts of interes