SHERPA-LEAP: a consortial model for the creation and support of academic institutional repositories

Purpose: To introduce SHERPA-LEAP, a model for the consortial development, population and support of eprints repositories. Design/methodology/approach: The organisational and technical structures of the consortium are described, including a brief summary of central and local resource responsibilities. Some positive and negative aspects of a consortial approach to institutional repository development, and of the SHERPA-LEAP model in particular, are identified. Outstanding issues and future plans for the consortium are outlined. Findings: SHERPA-LEAP is found to be succeeding in its aims of developing and supporting eprints repositories within the federal University of London. Some lessons learned from the SHERPA-LEAP approach are identified, but the SHERPA-LEAP consortial model is found to have been mostly beneficial to the participating institutions. In particular, the networking and experience-sharing opportunities which any consortial solution will facilitate are highly valued by the SHERPA-LEAP partners. Value: The case study is intended to help to inform the decision-making of institutions and consortia which are considering consortial solutions to the establishment and maintenance of institutional repositories

It's more than just physical therapy: reported utilization of physiotherapy services for adults with neuromuscular disorders attending a specialist centre.

PURPOSE: The purpose of this study is to evaluate service users' perceptions of their utilization of the physiotherapy service at a specialist Neuromuscular Centre and to identify their reasons for and barriers to attending. METHOD: A prospective survey design, consisting of a 13-item questionnaire was completed by 104 registered users of a physiotherapy service at a Neuromuscular Centre in northwest England. Descriptive statistics was employed to analyse data from Likert style questions and thematic analysis conducted on responses to open-ended questions. RESULTS: Over 79% of respondents were satisfied with the frequency and duration of their treatment. Respondents attended physiotherapy to obtain physical therapy, for general wellbeing and to access specialized resources. Barriers to attendance included work commitments, travel cost and time, and lack of Centre resources. Clients attending physiotherapy valued the specialist service including advice from therapists, perceived benefit from social interaction with other clients and physical therapy. CONCLUSION: Adults with neuromuscular disorders identified psychosocial as well as physical benefits from attending physiotherapy at the Neuromuscular Centre. The findings highlight the importance of service users' views in service provision and suggest that a collaborative commitment to patient management could by advantageous when developing physiotherapy services

The importance of embracing complexity in rehabilitation

In practice, clinicians recognize that the effectiveness of a rehabilitative intervention will be influenced by a range of uncontrollable, interrelated factors.1 For at least 40 years, a holistic, ‘whole person’ approach has acknowledged, albeit implicitly, that many factors will affect the success of an intervention.2 These influences are numerous and relate to social, personal, political and cultural variables: the very elements which together form the complex context in which rehabilitation occurs.3, 4 The term ‘complexity’ is often used throughout rehabilitation; notions such as complexity in practice, complex patients and complex problems are all familiar enough.1, 5, 6 To understand what we mean by complexity, a contrast may be helpful: a system we think of as complicated has many intricate elements that, whilst they can interact with one another in several ways, do so in a linear and predictable fashion; within a complex system, however, these intricate elements interact in ways that cannot be easily understood or predicted.4 Consequently, it is simple enough to foretell the behaviour of a complicated system, but impossible to perform the same feat with a complex one

Assessing uncertainties in scattering correction algorithms for reflective tube absorption measurements made with a WET Labs ac-9

In situ absorption measurements collected with a WET Labs ac-9 employing a reflective tube approach were scatter corrected using several possible methods and compared to reference measurements made by a PSICAM to assess performance. Overall, two correction methods performed best for the stations sampled: one using an empirical relationship between the ac-9 and PSICAM to derive the scattering error (ε) in the nearinfrared (NIR), and one where ε was independently derived from concurrent measurements of the volume scattering function (VSF). Application of the VSF-based method may be more universally applicable, although difficult to routinely apply because of the lack of commercially available VSF instrumentation. The performance of the empirical approach is encouraging as it relies only on the ac meter measurement and may be readily applied to historical data, although there are inevitably some inherent assumptions about particle composition that hinder universal applicability. For even the best performing methods, residual errors of 20% or more were commonly observed for many water types. For clear ocean waters, a conventional baseline subtraction with the assumption of negligible near-IR absorption performed as well or better than the above methods because propagated uncertainties were lower than observed with the proportional method

Using rhythm for rehabilitation: evaluation of a novel haptic device

This project explored how new and novel approaches to stroke rehabilitation could improve physical function and the confidence of stroke survivors to remain active and engaged in the community. The innovation trialed was a ‘Haptic bracelet/cueing device’, developed at The Open University. An overview of the Haptic device, its development and role in stroke rehabilitation can be viewed at: https://www.youtube.com/watch?v=S4ZxN6H6XGk The Haptic bracelets provide a physical (embodied) beat that someone can walk to as an alternative to existing audio cuing ways of working. The haptic device provides a non-invasive, relatively cheap way of facilitating people after stroke to continue to maintain or even improve their mobility after intensive rehabilitation has finished. This research explored the impact of the haptic device to gains in mobility. The project had two key aims: 1. To develop a usable and practical prototype of a haptic device to restore gait symmetry after stroke. 2. To investigate the feasibility and acceptability of the prototype in stroke patients. Summary of findings and recommendations When introduced to the Haptic Bracelets participants hoped the product would provide them with: • More confidence and make them feel safer when walking. • Greater ability to take bigger strides rather than little steps. • A way to combat the silly mistakes participants reported making due to tiredness. • Reduced pain (knees, hips) The physiotherapists saw potential for the Haptic devices as part of post stroke rehabilitation, but expressed concern about their lack of access to mobile technologies when out in community practice settings. There were also concerns about use with some stroke survivors because of issues of cognition; and the sensation from the Haptic beat. In the Haptic gait testing • All the participants demonstrated good mobility performance prior to the study (high score on the Rivermead mobility scale) • 4/7* (57.1%) participants who were the most asymmetrical at baseline improved their gait symmetry whilst wearing the haptic device • 3/7* (42%) participant’s gait symmetry continued to improve in the post off condition. • All the participants walked quicker in post-op condition. However, gait speed varied between participants when they were wearing the haptic bracelets. • Participants were had had their strokes between 3-10 years ago, but there was still an indication that the Haptic bracelets were having some impact on mobility. • Syncing of the Haptic device and more mobile Inertial Measurement Unit (IMU) to the fixed gait laboratory (gold standard) system has improved the potential for more community based rehabilitation and commercialisation of the Haptic bracelets. • Post Haptic interviews identified that there were mixed participant feelings about the bracelets. However, some did express positive experiences from testing the Haptic bracelets, including a carry over effect after the devices were removed. Recommendations As this was a pilot study more work is now required to explore the: • use of the Haptic bracelets in community rehabilitation settings • feasibility of the using Haptic bracelets in community settings, particularly looking at staff access to new technologies • potential for the Haptic bracelets to be used in the home as part of ongoing rehabilitation • benefits of Haptic bracelets in the context of longer term stroke rehabilitation • future design needs to improve the look, size and ease of application • cost benefits of using Haptic bracelets as part of an overall program of stroke rehabilitation

Reported fatigue in people after Guillain-Barré Syndrome: a retrospective national survey in the UK

Aim. Despite continuing functional recovery over time, fatigue remains a persistent feature of post-acute GuillainBarré Syndrome (GBS). The aim of this study was to determine the prevalence of fatigue in people after GBS and investigate its associations with other factors after GBS. Methods. Validated questionnaires including the SF-36 and fatigue severity scale were sent to members of the GBS support group, a UK wide patient and carer organisation. Results. A total of 884 questionnaires were returned (58% response rate). Respondents’ answers demonstrated that those with severe fatigue following GBS had spent longer in hospital than those who were not severely fatigued (P=0.003). Poorer mental health was also associated with more severe fatigue. A strong predictor of prolonged fatigue was discharge from hospital in a wheelchair (OR=2.37, 95% CI 1.52 to 3.71, P<0.001) but the severity of fatigue appeared to be independent of recovery of mobility (Kendall’s taub=0.03, P=0.2). Conclusion. This survey is the largest study of fatigue in people after GBS. Its findings demonstrate that fatigue remains a persistent problem for many people after GBS. More severe fatigue was associated with decreased health related quality of life and increased levels of depression and anxiety in people after GBS. Whilst the severity of fatigue was significantly associated with poorer mobility on discharge, there was no association between the recovery of mobility after discharge and fatigue severity. This indicates that whilst other impairments and activity limitations improved over time, fatigue did not and implies that more severe fatigue is not simply an indicator of a more severe presentation of GBS. Whilst the reasons for persistent severe fatigue remain unclear, this study indicates that further investigations of mobility, mental health and fatigue are warranted so that targeted interventions can be put in place to manage this debilitating complication. (It J Physiotherapy 2013;3:154-60

A low-density single nucleotide polymorphism panel for brown trout (Salmo trutta L.) suitable for exploring genetic diversity at a range of spatial scales

This is the final version. Available on open access from Wiley via the DOI in this recordThe rivers of southern England and northern France which drain into the English Channel contain several genetically unique groups of trout (Salmo trutta L.) that have suffered dramatic declines in numbers over the past 40 years. Knowledge of levels and patterns of genetic diversity is essential for effective management of these vulnerable populations. Using restriction site-associated DNA sequencing (RADseq) data, we describe the development and characterisation of a panel of 95 single nucleotide polymorphism (SNP) loci for trout from this region and investigate their applicability and variability in both target (i.e., southern English) and non-target trout populations from northern Britain and Ireland. In addition, we present three case studies which demonstrate the utility and resolution of these genetic markers at three levels of spatial separation:(a) between closely related populations in nearby rivers, (b) within a catchment and (c) when determining parentage and familial relationships between fish sampled from a single site, using both empirical and simulated data. The SNP loci will be useful for population genetic and assignment studies on brown trout within the UK and beyond.European Union Interreg France (Channel) England programmeWestcountry Rivers Trus

Cardiovascular disease in Alpha 1 antitrypsin deficiency:an observational study assessing the role of neutrophil proteinase activity and the suitability of validated screening tools

Background: Alpha 1 Antitrypsin Deficiency (AATD) is a rare, inherited lung disease which shares features with Chronic Obstructive Pulmonary Disease (COPD) but has a greater burden of proteinase related tissue damage. These proteinases are associated with cardiovascular disease (CVD) in the general population. It is unclear whether patients with AATD have a greater risk of CVD compared to usual COPD, how best to screen for this, and whether neutrophil proteinases are implicated in AATD-associated CVD. This study had three aims. To compare CVD risk in never-augmented AATD patients to non-AATD COPD and healthy controls (HC). To assess relationships between CVD risk and lung physiology. To determine if neutrophil proteinase activity was associated with CVD risk in AATD. Cardiovascular risk was assessed by QRISK2® score and aortic stiffness measurements using carotid-femoral (aortic) pulse wave velocity (aPWV). Medical history, computed tomography scans and post-bronchodilator lung function parameters were reviewed. Systemic proteinase 3 activity was measured. Patients were followed for 4 years, to assess CVD development. Results: 228 patients with AATD, 50 with non-AATD COPD and 51 healthy controls were recruited. In all COPD and HC participants, QRISK2® and aPWV gave concordant results (with both measures either high or in the normal range). This was not the case in AATD. Once aPWV was adjusted for age and smoking history, aPWV was highest and QRISK2® lowest in AATD patients compared to the COPD or HC participants. Higher aPWV was associated with impairments in lung physiology, the presence of emphysema on CT scan and proteinase 3 activity following adjustment for age, smoking status and traditional CVD risk factors (using QRISK2® scores) in AATD. There were no such relationships with QRISK2® in AATD. AATD patients with confirmed CVD at four-year follow up had a higher aPWV but not QRISK2® at baseline assessment. Conclusion: aPWV measured CVD risk is elevated in AATD. This risk is not captured by QRISK2®. There is a relationship between aPWV, lung disease and proteinase-3 activity. Proteinase-driven breakdown of elastin fibres in large arteries and lungs is a putative mechanism and forms a potential therapeutic target for CVD in AATD

Relationship of CT densitometry to lung physiological parameters and health status in alpha-1 antitrypsin deficiency: initial report of a centralised database of the NIHR rare diseases translational research collaborative.

Funder: Foundation for the National Institutes of Health; FundRef: http://dx.doi.org/10.13039/100000009OBJECTIVES: To establish a database network for the study of alpha-1 antitrypsin deficiency (AATD) and compare the results to CT lung density as the most direct measure of emphysema. DESIGN: A central electronic database was established to permit the upload of anonymised patient data from remote sites. Prospectively collected CT data were recorded onto disc, anonymised, analysed at the coordinating centre and compared with the clinical features of the disease. SETTING: Tertiary referral centres with expertise in the management of AATD focused on academic Biomedical Research Units and Wellcome Clinical Research Facilities. PARTICIPANTS: Data were collected from 187 patients over 1 year from eight UK academic sites. This included patient demographics, postbronchodilator physiology, health status and CT. Analysis was undertaken at the coordinating centre in Birmingham. RESULTS: Patient recruitment in the 12 months reached 94% of target (set at 200) covering the whole spectrum of the disease from those with normal lung function to very severe chronic obstructive lung disease. CT scan suitable for analysis was available from 147 (79%) of the patients. CT density, analysed as the threshold for the lowest 15% of lung voxels, showed statistically significant relationships with the objective physiological parameters of lung function as determined by spirometric Global Initiative for Chronic Obstructive Lung Disease (GOLD) severity staging (p<0.001) and carbon monoxide gas transfer (p<0.01). Density also correlated with subjective measures of quality of life (p=0.02). CONCLUSIONS: Establishment of the network for data collection and its transfer was highly successful facilitating future collaboration for the study of this rare disease and its management. CT densitometry correlated well with the objective clinical features of the disease supporting its role as the specific marker of the associated emphysema and its severity. Correlations with subjective measures of health, however, were generally weak indicating other factors play a role