bluuebunny/crossref_metadata_2025_split huggingface dataset:
Implementation strategies supporting fall prevention interventions in a long-term care facility for older persons: a systematic review protocol
Authors: Albasha Neah , McCullagh Ruth , Cornally Nicola , McHugh Sheena , Timmons Suzanne 
Published: May 2022

IntroductionFalls are common among older people in long-term care facilities (LCFs). Falls lead to significant morbidity, mortality and reduced quality of life among residents. Fall prevention interventions have been shown to reduce falls in LCFs. However, this may not always translate to effectiveness in real-world situations. We will conduct a systematic review (SR) to identify the implementation strategies used in fall prevention interventions in LCF, describing the effectiveness of strategies in terms of key implementation outcomes and fall reduction.Methods and analysisThe search will include scientific papers in electronic databases, including PubMed, CINAHL, Embase, PsycINFO, Scopus and Web of Science, and published theses. The SR will consider all original research that empirically evaluated or tested implementation strategies to support fall prevention interventions in LCF, published in English or Arabic between 1 January 2001 and 31 December 2021, where data are presented on the implementation strategy (eg, audit and feedback, champions) and/or implementation outcome (eg, fidelity). Clinical trials, quasi-experimental studies and quality improvement studies will be eligible for inclusion. Two researchers will complete abstract screening, data abstraction and quality assessments independently. The screening process will be presented using a Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. Data will be extracted into a standardised table, including the country, year, authors, type of study, primary clinical outcome (falls rate and/or risk reduction as available), implementation strategy and implementation outcomes. Implementation strategies will be defined and categorised using the Expert Recommendation for Implementing Change Taxonomy. Implementation outcomes will be defined and categorised using the Implementation Outcomes Taxonomy, and clinical outcomes of the intervention effectiveness for falls preventions will be reported as formulated in each study, with a final narrative synthesis of data.Ethics and disseminationEthical approval is not required for this study, and the results will be disseminated via peer-reviewed journals and presented at international conferences.PROSPERO registration numberCRD42021239604.
Barriers towards deceased organ donation among Indians living globally: an integrative systematic review using narrative synthesis
Authors: Vincent Britzer Paul , Randhawa Gurch , Cook Erica 
Published: May 2022

ObjectivesTo understand the barriers towards deceased organ donation among Indians living globally.DesignIntegrative systematic review using narrative synthesis.Data sourcesCINAHL, Medline full-text, PsycInfo, Scopus, Global Health, Web of Science, and PubMed Central,Indian Journal of Transplantationand Google Scholar.Time period1 January 1994 to 31 December 2021.ParticipantsIndividuals of Indian origin living globally.ResultsEighty-nine studies were included with more than 29 000 participants and quality of the studies were assessed using Joanna Briggs Institute’s critical appraisal tool. Though majority of the participants had knowledge toward organ donation with a positive influence on willingness, the gap between knowledge and willingness was huge, with minimal registration influenced by the complex sociocultural constructs. Various sociocultural constructs such as family, fear and mistrust, religion, and bodily issues play a vital role. Differences were identified in willingness to donate and register between southern and other regions of India. Indian’s organ donation behaviour in other geographical locations differed based on the socioreligious background of the country they lived in such as in Malaysia, Canada and the UK. However, they were collective in decision-making and had complex sociocultural interference irrespective of the country the individual lived which differed only in their next generations.ConclusionThough this study showed the complex relationship, and its influences on organ donation behaviour, lacunae were identified to further understand how such complex interactions determine or inform the behaviour. Also, methodological issues were identified, where this particular population outside India were collectively studied with their neighbouring population which are not homogenous. Studies in India majorly addressed a similar aim using similar methods which produced repetition of studies leading to lack of diversified, wider and in-depth research. Therefore, while this systematic review addressed the barriers toward organ donation among Indians living globally, it also informs various gaps in research and also methodological issues.PROSPERO registration numberCRD42019155274.
IgG1 pan-neurofascin antibodies define a severe and frequently fatal GBS-like neuropathy which responds to rituximab
Authors: Fehmi Janev , Jon Walters R , Lavin Tim , Keh Ryan , Rossor Alexander M , Munteanu Tudor , Delanty Norman , Roberts Rhys , Baumer Dirk , Rinaldi Simon 
Published: May 2022

ImportanceDisease modifying treatments in Guillain-Barré syndrome (GBS) are not tailored to the different pathological subtypes. Strategies to prospectively identify sub-sets of patients with specific disease mecha- nisms and inform the use of non-standard therapies may lead to improved outcomes. We present a case series of seven patients with IgG1 subclass pan-neurofascin antibodies.ResultsAll seven patients presented with a severe, acute or sub-acute onset, predominantly motor, autoimmune neuropathy. In all but one case the neuropathy was severe enough to warrant mechanical ventilation and intensive care support. Cranial nerve deficits were universally present and autonomic dysfunction was common. Although clinically resembling GBS, the response to standard GBS therapies was poor. Four patients received the B-cell depleting therapy rituximab and showed significant and sustained functional improvement within weeks of treatment. The three remaining patients who did not receive rituximab died.Conclusions and RelevanceThese observations should lead to a re-evaluation of the benefit of nodal/paranodal antibody testing in neuropathies with acute onset, GBS-like presentations. We believe that such testing should form part of the routine diagnostic work up of such patients, and that the identifica- tion of a distinct, serologically-defined disease sub-type should prompt consideration of more targeted immunotherapy. The apparent benefit of rituximab reported here should be evaluated in a well-conduc- ted clinical trial, the design of which must consider the potentially grave outcome in pan-neurofascin antibody-positive patients receiving only standard therapies.simon.rinaldi@nhs.net
068  Immune checkpoint inhibitors: the neurologist’s role
Authors: Brown Rachel , Spillane Jennifer , Lunn Michael , Zandi Michael , Rees Jeremy , Larkin James , Turajlic Samra , Carr Aisling 
Published: May 2022

Over the last decade, immune checkpoint inhibitors (ICIs) have revolutionised treatment and outcomes for an increasing number of cancer types. By ‘removing the breaks’ they boost the anti-tumour immune response, but their effect is non-specific, and a number of systemic toxicities may arise. Neurological toxicity occurs in 1–14% patients depending upon the ICI regime used (Spain et al., 2016). We have developed a collaborative neurotoxicty service with the Royal Marsden Hospital, and demonstrate that early involve- ment of the neurologist is paramount to ensuring effective and efficient care in this patient group.To date, we have received 24 referrals regarding neurological symptoms in patients receiving ICIs. While half were due to ICI-related neurotoxicity, the remainder were caused by cancer progression (2), neurologi- cal side-effects of either other drugs (3) or systemic immune toxicities (2), or worsening/new ‘conventional’ neurological disorders (5). Therefore in addition to identifying and managing neurological toxicity, the role of the neurologist is to identify where neurological toxicity has not occurred, thus enabling the patient to be treated appropriately, while continuing with potentially life-saving immune therapy. With increasing use of these drugs, more robust understanding of risk, patterns and mechanisms of neurological injury must be established through collaborative, cross-disciplinary work to optimise outcomes in this patient group.rachel.brown@ucl.ac.uk
075  Top 10 research priorities for patients with primary mitochondrial disease and their carers
Authors: Graves Tracey ,   Rare Mitochondrial Disease Priority Setting Partnership Steering Committee,   Genetic Alliance UK
Published: May 2022

Primary mitochondrial diseases encompass a number of clinical presentations with a spectrum of severity, lack effective disease-modifying therapies and have high mortality. It is therefore vital to know that research meets the needs of people with mitochondrial disease. Priority setting partnerships are an established collaborative methodology bringing patients, charity representatives and clinicians together to establish the most pressing and unanswered research priorities.We developed a web-based questionnaire, asking patients affected by primary mitochondrial disease, their carers and clinicians to pose their research questions. This yielded 709 questions from 50 patients, 47 carers and 50 clinicians. These were grouped into themes and filtered to exclude unanswerable questions. A literature search was performed to determine which of these questions are unanswered. This process resulted in 42 answerable questions. Patients, carers and clinicians were invited again to prioritise these questions and rank them from ‘important’ to ‘less important’ using a web-platform. This identified 24 questions which were then taken forward to a face-to-face workshop attended by a diverse range of patients, carers, charity representatives and clinicians, where the relative merits and strengths of each question was debated to create a definitive ‘top 10 of unanswered research questions for primary mito- chondrial disease’.tracey.graves@btinternet.com
080  Home mechanical ventilation (HMV) in primary muscle disease: a 12-year single centre cohort study
Authors: Murphy Patrick , Marino Phillip , Howard Leo , Ramsay Michelle , Kaltsakas George , Hart Nick , Howard Robin 
Published: May 2022

HMV support is required to manage ventilatory failure in different primary muscle disorders with varying patterns of respiratory muscle weakness and progression.We present a series of 232 patients with dystrophies who received HMV. The number of patients with the condition and the mean duration of support to death (n=75) or December 2019 was;Duchenne Muscular dystrophy – 113 patients (64 alive: 49 died) received HMV for 70m (1–240).Myotonic dystrophy – 42 patients (40:2) - 52m (1–185).Limb girdle – 36 patients (18:18) – 71m (4–130).Congenital – 14 (all alive) – 50m (6–101).Facioscapulohumeral – 9 (8:1) – 94m (46–209)Becker – 8 (3:5) – 40m (15–120)Ventilation was generally supported with a NIPPY 3+ device using pressure control mode with varying dependence and interfaces according to disease severity and patient preference. 57% patients had established respiratory failure, 9% underwent tracheostomy, 51% used cough assist devices and 31% underwent gastrostomy.This series indicates that prolonged survival is possible for patients with primary muscle disease who develop respiratory muscle weakness. The ventilation method, the level of home support and the need for adjuvant support over long periods may vary according to the wishes of the patient, the extent of generalized limb and bulbar weakness, and the pattern of progression.robinhoward@nhs.net
084  Is there a positive correlation between single breath count and forced vital capacity?
Authors: Aslanyan Aram , Boardman Jeremy , Glasse Hannah , Lilleker James , Mohanraj Rajiv 
Published: May 2022

IntroductionMonitoring respiratory function is a critical part of the management of patients with acute neuromuscular disease. Single breath count (SBC) testing is often performed as a surrogate for the Forced Vital Capacity (FVC), especially in resource poor environments. However, equivalence of these two tests has not been formally evaluated.MethodsWe will compare the SBC and FVC in 50 healthy adults. Correlation will be evaluated using linear regression and factors influencing the SBC and FVC will be investigated.ResultsTo date 10 participants have been recruited (4 male, 6 female, mean age 30 years). Provisional analysis has shown a mean best SBC and FVC was 71 (SD 19) and 4.8 Litres (SD 1.3) respectively. In this small sample a significant correlation between SBC and FVC was demonstrated (p=0.03, R-squared=0.47). Recruitment is on schedule to complete by March 2020 and full results will be available for presentation at the conference.DiscussionTo our knowledge no study has directly compared SBC and FVC in healthy adult population. Our study will provide useful data to help understand the appropriateness of interchanging these tests in clinical practice.aram.aslanyan@srft.nhs.uk
089  R-CP chemoimmunotherapy in IgM paraproteinaemic neuropathy produces improvements in serological, neurological and neurophysiological outcomes
Authors: Colchester Nancy TH , Allen David , Katifi Haider A , Burt Tracy , Lown Robert N , Pinto Ashwin A , Duncombe Andrew S 
Published: May 2022

There is ongoing debate as to the optimum treatment for IgM paraproteinaemic neuropathy, although there is accumulating evidence that rituximab benefits a proportion of patients. We present a case series of 18 patients with IgM paraproteinaemic neuropathy treated with standard R-CP (rituximab, cyclophos- phamide, prednisolone) chemoimmunotherapy. 13 patients were positive for anti-MAG (myelin associ- ated glycoprotein) antibody. The remaining five had a clinical phenotype suggesting that their IgM paraprotein was causative in their neuropathy. Detailed neurological, neurophysiological and serological outcome data were recorded 1 and 2 years post treatment. The treatment was well tolerated. At 2 years, compared to baseline, a statistically significant improvement was seen in paraprotein concentration, anti-MAG titre, MRC sum score and (from the electrophysiology) the distal motor latency. Percentage of patients improving at 2 years was as follows: Overall neuropathy limitation score 56%, MRC sum score 69%, sensory sum score 61%, anti-MAG titre 100%. These responses compare favourably to those seen with rituximab monotherapy, reported in the literature at 30–50%. On long-term follow-up, 3 cases of glio- blastoma were seen, the aetiology of which is unclear. We suggest there is need for further study of the mechanisms both of the clear neurological benefit but also of the potential risk.ncolchester@yahoo.com
094  Home mechanical ventilation (HMV) in motor neurone disease: a 12 year single centre cohort study
Authors: Kaltsakas George , Ramsay Michelle , Howard Leo , Sheridan Shauna , Murphy Patrick , Marino Phillip , Hart Nick , Howard Robin 
Published: May 2022

HMV support for patients living with motor neuron disease MND is recommended by NICE to improve quality of life and survival. Although there are intermediate term outcome data, long-term data are sparse.From 2007 to 2019, 413 patients (246 male) received HMV; 310 have died (75.0%). Age at onset was 61.4 ±12.4 years. The duration between onset of symptoms and diagnosis was 13 months (0–104) and between onset of symptoms and referral was 29 months (0–300). At presentation, 37% patients had established res- piratory failure with a further 13% exhibiting incapacitating breathlessness. Survival was 11.9 ± 18.5 months after commencing HMV although the duration of HMV support for those still alive was 26.6 ± 30.5 months. 9.0% received long-term tracheostomy; 53% had gastrostomy feeding tubes and 25.7% cough assist device.These data show a delay both in establishing a definitive diagnosis of MND and in referring for specialist support. Delaying referral until severe respiratory compromise has developed may reduce the sympto- matic benefits of NIV. Prolonged survival with HMV support is possible but early intervention is essential to optimise clinical management. The data and clinical experience serve to emphasise the importance of early referral for specialist respiratory assessment and management.robinhoward@nhs.net
096  Maintenance IVIg safe prescribing – audit of proforma and traffic light risk assessment system in NHNN
Authors: Delaney Milo , Gillingham Alexandra , Compton Laura , Kapoor Mahima , Lavin Timothy , Rossor Alexander , Manji Hadi , Reilly Mary , Lunn Michael , Carr Aisling 
Published: May 2022

IntroductionWe recently published safety data on maintenance IVIg therapy for inflammatory neuropa- thies in similar patient cohorts from NHNN and the Manchester Neurosciences group [1,2]. Based on our findings the following clinical practice changes have been introduced:Routine monitoring and proactive treatment of vascular risk factors A traffic light system for guidance on appropriate blood testing.MethodsAnalysis of 2 weeks of IVIg admissions in NHNN prior to and within a month of the introduction of the proforma. Ethics was granted by the clinical governance committee.Results69 patient episodes were identified. 63(91.3%)day-care admissions, 6(8.7%)inpatient. 34 female (49.3%).18 patients(26.1%) had bloods taken prior to administration, 60(87%) and 30(43.5%) were screened for symptoms of venous and arterial thromboembolism. 2 (2.9%) and 0 were asked about VTE and ATE risk factors. 63 (91.3%) were asked about infectious symptoms. After introduction of the proforma screening for VTE, TTE and infections symptoms and risk improved to 100%. Aprropriate pre-IVIg bloods were taken in 4(6%).ConclusionIVIg is effective and low risk therapy for inflammatory neuropathy, however rare and serious complications can occur. We created this proforma to optimise safety monitoring in longterm mainte- nance therapy with reassuring improvements in this pilot review.milo.delaney@nhs.net
107  Tapia’s syndrome – is the mechanism neuropraxia from intubation or is it more complex?
Authors: Hutchinson Joseph , MacDonald Bridget 
Published: May 2022

An otherwise well 23 year old lady had a septorhinoplasty with bilateral implants under general anaesthesia for nasal blockage and right sided nasal deviation.The operation was successful but six hours later the left side of her tongue felt odd, she had dysphonia and ‘it felt funny to swallow’. She had deviation of the tongue to the left on protrusion; couldn’t quickly it it from side to side; and the sensation on its left side was altered. There wasn’t obvious tongue swelling or haematoma and no weakness or numbness in the face or limbs. Naso-endoscopy confirmed a left vocal cord paralysis.This was recognised as a left sided hypoglossal and vagal nerve palsy. The ENT and anaesthetic teams, felt that it might have been due to over-packing of the throat causing compression and neuropraxia. Her symptoms substantially improved after 5 days with a course of dexamethasone.This case will be discussed with reference to both the first described and more recent case reports of Tapia’s syndrome along with the hypothesised mechanisms of injury. Tapia’s syndrome is a thought to be due to pressure during intubation but most case reports follow surgeries with hammering and other sudden applications of force, rather than in emergency situations which would be expected to have more problems resulting from intubation. It seems important that those who resuscitate patients are aware of this potential complication.hut898@gmail.com
Late-onset epilepsy predicts future stroke: a systematic review and meta-analysis
Authors: Wall Jasmine , Knight Jo , Emsley Hedley 
Published: May 2022

Late-onset epilepsy (LOE) is closely associated with cerebrovascular disease. LOE also appears to be a harbinger of dementia. We performed a systematic review of observational studies, clinical studies and radiological studies relating to LOE. We conducted a meta-analysis of 5 observational studies and have found that patients presenting with LOE experience an increased risk of subsequent stroke, weighted OR 3.88 (95% CI 2.76 - 5.46). Above the age of fifty, incidence of new onset epilepsy is approximately 400/100,000 person years. Of these, 9.8–11.9% will have a stroke in the decade following epilepsy onset, translating to an incidence of «pre-stroke epilepsy» of 25–55/100,000 person years. The additional studies demonstrated clinical and radiological evidence to support the premise that LOE is likely to reflect underly- ing cerebrovascular disease. Cerebrovascular risk factors convey increased risk of LOE, and LOE can act as a «harbinger» for stroke and dementia, with various proposed pathophysiological mechanisms. The onset of LOE may represent a potential point for intervention, with the aim of stroke prevention. Current data supports the need for prospective research in order to better understand the natural history of LOE, disease mechanisms and opportunities for intervention to reduce the apparent sequelae of stroke and dementia.jasminewall@googlemail.com
116  Management of acute neurological conditions: an e-learning course to support clinical pathways
Authors: Wu Kit , Farag Mena , Tamborska Arina , Mahmood Amira , Theochari Evangelia , Larcombe Karen , Ellis Cathy 
Published: May 2022

Introduction andAimAcute neurological problems are prevalent, accounting for 10–20% of medical admissions, but management is often challenging and require input from different teams (A&E, acute medicine, neurology). There is no standardised training for staff in the management of acute neurological conditions and existing clinical pathways for these conditions are often underutilised with variable impact on patient outcome. The use of e-learning has gained popularity in the last decade, showing that it can be as effective as conventional didacticism [Warnecke et al, 2011]. Here, we detail the development of an e-learning course on management of acute neurological conditions to support use of integrated clinical pathways and to facilitate self-directed learning.Method andResultsUsing principles of People, Analysis, Content and Technology (PACT), we defined target learners, their learning needs, challenges in assimilating knowledge and the resources required. Topics were derived from three themes: acute neurological emergencies, commonly seen conditions, and ‘lessons from serious incidents’. Each module lasts 10 minutes and is embedded with a pre- and post-course knowledge quiz. In collaboration with the Neurosciences Institute Programme at King’s Health Partners, an academic Health Science Centre, the course will be hosted and supported by the KHP e-learning platform.SummaryThis e-learning course supports the use of clinical pathways and facilitates clinicians in consoli- dating knowledge. It is flexible, highly transferable, and can be integrated into work-based learning for continuous professional development.kitwu@doctors.org.uk