Nutritional management of individuals with Huntington’s disease: nutritional guidelines

The delivery of good nutritional care is a fundamental element of the management of individuals with Huntington’s disease and all patients with Huntington’s disease will, at some time, need dietary intervention because of the sequela of the disease; yet there are no European nutritional guidelines. The European Huntington’s Disease Network Standards of Care Dietitians Group has brought together expert dietitians from across Europe to produce nutritional guidelines to improve the nutritional management of individuals with Huntington’s disease. The guidelines were developed to promote optimal nutritional screening, assessment and management of individuals throughout all stages of the disease, with the aim of improving the standard of nutritional care delivered. Literature was systematically searched in an attempt to ensure that the recommendations are based on sound evidence and where evidence is lacking, specific guidance is based on consensus expert dietetic opinion. The provision of nutritional care varies widely between countries. Implementation of these nutritional guidelines across Europe should improve the quality of nutritional care delivered to individuals with Huntington’s disease

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

Genomic investigations of unexplained acute hepatitis in children

Since its first identification in Scotland, over 1,000 cases of unexplained paediatric hepatitis in children have been reported worldwide, including 278 cases in the UK1. Here we report an investigation of 38 cases, 66 age-matched immunocompetent controls and 21 immunocompromised comparator participants, using a combination of genomic, transcriptomic, proteomic and immunohistochemical methods. We detected high levels of adeno-associated virus 2 (AAV2) DNA in the liver, blood, plasma or stool from 27 of 28 cases. We found low levels of adenovirus (HAdV) and human herpesvirus 6B (HHV-6B) in 23 of 31 and 16 of 23, respectively, of the cases tested. By contrast, AAV2 was infrequently detected and at low titre in the blood or the liver from control children with HAdV, even when profoundly immunosuppressed. AAV2, HAdV and HHV-6 phylogeny excluded the emergence of novel strains in cases. Histological analyses of explanted livers showed enrichment for T cells and B lineage cells. Proteomic comparison of liver tissue from cases and healthy controls identified increased expression of HLA class 2, immunoglobulin variable regions and complement proteins. HAdV and AAV2 proteins were not detected in the livers. Instead, we identified AAV2 DNA complexes reflecting both HAdV-mediated and HHV-6B-mediated replication. We hypothesize that high levels of abnormal AAV2 replication products aided by HAdV and, in severe cases, HHV-6B may have triggered immune-mediated hepatic disease in genetically and immunologically predisposed children

The impact of percutaneous endoscopic gastrostomy feeding on quality of life

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The impact of percutaneous endoscopic gastrostomy feeding on quality of life

The provision of enteral feeding continues to increase with approximately 20,000 people in the United Kingdom feeding at home. Health care professionals have an ethical duty to recognise and treat malnutrition, though in clinical practice they are often faced with difficult decisions to ensure that the benefits of tube feeding are greater than the burdens; that the provision of a tube feed is in the patient's best interests. The aim of this study was to evaluate how the provision of enteral nutrition via a Percutaneous Endoscopic Gastrostomy (PEG) impacts on the Quality of Life (QoL) of patients from the patients' and carers' perspectives. Initially, QoL was measured using the SF36 Health questionnaire. A longitudinal, prospective pilot study was undertaken including clinical and QoL assessments prior to PEG placement, and at one week, one month, three months and six months following PEG insertion. The results of the pilot study of 22 patients clearly demonstrated that the SF-36 was not an appropriate tool for measuring QoL in this patient group. A semi-structured interview approach was developed to determine the concerns relating to PEG feeding and how feeding impacted on QoL. Health care professionals' views were also sought using a postal questionnaire and the results compared to those of patients and carers. These data informed the development of a preliminary QoL assessment tool which involved item generation, item reduction, response scale generation and pre-testing for acceptability and feasibility. Sixteen adult patients, 27 carers of adults and 24 carers of children were interviewed. In general, patients living in their own home viewed their QoL as acceptable. However, the carers of adult patients were less positive about the patients QoL. In contrast, the carers of children frequently reported their child's QoL to be acceptable. The reported impact of feeding on daily and social lives ranged from the PEG feeding being totally disruptive to the PEG having no impact at all. Delayed and disturbed sleep, restricted ability to go out, difficulties finding a place outside the home to feed, childcare problems, the negative attitudes of others towards feeding and family divisions emerged as key issues and concerns. A wide range of feelings towards the PEG feeding including feelings of anger, gratitude, relief and fear were expressed. Healthcare professionals, carers and patients disagreed on key issues of patient and carer involvement in the decision making process, the quantity of information provided prior to PEG placement, appropriateness of patient selection for the procedure and acceptability of QoL. The delivery of patient centred care must be based on appropriate patient selection, decisionmaking, setting of treatment goals for PEG feeding and the evaluation of the impact of treatment. Current generic QoL measures are highly likely to be inappropriate to measure the impact of feeding upon QoL and a validated PEG specific QoL tool is required to measure the impact of PEG feeding upon QoL. A research proposal has been developed to fully validate the tool for use in clinical practice. The impact of PEG feeding on QoL was variable. Although it is recognised that the results are not generalisable to wider populations, the results support increased patient and carer involvement in the decision-making process, more appropriate information, timely explanations of the procedure and flexible care in the community to meet patients' needs

Mothers' Process of Decision Making for Gastrostomy Placement

In this article we present the findings of an exploration of mothers’ discourses on decision making for gastrostomy placement for their child. Exploring in-depth interviews of a purposive sample, we analyzed the mothers’ discourses of the decision-making process to understand how their experiences of the process influenced their subsequent constructions of decision making. Mothers negotiated decision making by reflecting on their personal experiences of feeding their child, either orally or via a tube, and interwove their background experiences with the communications from members of the health care team until a decision was reached. Decision making was often fraught with difficulty, resulting in anxiety and guilt. Experiences of decision making ranged from perceived coercion to true choice, which encompasses a truly child-centered decision. The resulting impact of the decision-making process on the mothers was profound. We conclude with an exploration of the implications for clinical practice and describe how health care professionals can support mothers to ensure that decision-making processes for gastrostomy placement in children are significantly improved

Malnutrition is dangerous: The importance of effective nutritional screening and nutritional care

In July 2010, the Government published the White Paper Equity and Excellence: Liberating the NHS, which places a strong emphasis on patient safety, sets the long-term vision for the NHS and describes a coherent framework of reform to deliver health care amongst the best in the world. Good nutritional care is a prerequisite of safe care and hence fundamental to the achievement of this vision, especially for vulnerable individuals. This article outlines the prevalence and costs associated with malnutrition* and the impact of malnutrition on patient safety within the context of the current NHS reforms. It concludes with guidance for clinicians and senior managers which, where fully implemented, will facilitate good nutritional care and ensure compliance to nutritional guidelines, standards and legislation including the regulations relating to nutrition as set out in the Health and Social Care Act 2008 (Regulated Activities) Regulations 2009 and the Care Quality Commission (Registration) Regulations 2009

Global, regional, and national burden of traumatic brain injury and spinal cord injury, 1990-2016 : a systematic analysis for the Global Burden of Disease Study 2016

Background Traumatic brain injury (TBI) and spinal cord injury (SCI) are increasingly recognised as global health priorities in view of the preventability of most injuries and the complex and expensive medical care they necessitate. We aimed to measure the incidence, prevalence, and years of life lived with disability (YLDs) for TBI and SCI from all causes of injury in every country, to describe how these measures have changed between 1990 and 2016, and to estimate the proportion of TBI and SCI cases caused by different types of injury. Methods We used results from the Global Burden of Diseases, Injuries, and Risk Factors (GBD) Study 2016 to measure the global, regional, and national burden of TBI and SCI by age and sex. We measured the incidence and prevalence of all causes of injury requiring medical care in inpatient and outpatient records, literature studies, and survey data. By use of clinical record data, we estimated the proportion of each cause of injury that required medical care that would result in TBI or SCI being considered as the nature of injury. We used literature studies to establish standardised mortality ratios and applied differential equations to convert incidence to prevalence of long-term disability. Finally, we applied GBD disability weights to calculate YLDs. We used a Bayesian meta-regression tool for epidemiological modelling, used cause-specific mortality rates for non-fatal estimation, and adjusted our results for disability experienced with comorbid conditions. We also analysed results on the basis of the Socio-demographic Index, a compound measure of income per capita, education, and fertility. Findings In 2016, there were 27.08 million (95% uncertainty interval [UI] 24.30-30.30 million) new cases of TBI and 0.93 million (0.78-1.16 million) new cases of SCI, with age-standardised incidence rates of 369 (331-412) per 100 000 population for TBI and 13 (11-16) per 100 000 for SCI. In 2016, the number of prevalent cases of TBI was 55.50 million (53.40-57.62 million) and of SCI was 27.04 million (24 .98-30 .15 million). From 1990 to 2016, the age-standardised prevalence of TBI increased by 8.4% (95% UI 7.7 to 9.2), whereas that of SCI did not change significantly (-0.2% [-2.1 to 2.7]). Age-standardised incidence rates increased by 3.6% (1.8 to 5.5) for TBI, but did not change significantly for SCI (-3.6% [-7.4 to 4.0]). TBI caused 8.1 million (95% UI 6. 0-10. 4 million) YLDs and SCI caused 9.5 million (6.7-12.4 million) YLDs in 2016, corresponding to age-standardised rates of 111 (82-141) per 100 000 for TBI and 130 (90-170) per 100 000 for SCI. Falls and road injuries were the leading causes of new cases of TBI and SCI in most regions. Interpretation TBI and SCI constitute a considerable portion of the global injury burden and are caused primarily by falls and road injuries. The increase in incidence of TBI over time might continue in view of increases in population density, population ageing, and increasing use of motor vehicles, motorcycles, and bicycles. The number of individuals living with SCI is expected to increase in view of population growth, which is concerning because of the specialised care that people with SCI can require. Our study was limited by data sparsity in some regions, and it will be important to invest greater resources in collection of data for TBI and SCI to improve the accuracy of future assessments. Copyright (C) 2018 The Author(s). Published by Elsevier Ltd.Peer reviewe

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases : subgroup analyses of the RESTART randomised, open-label trial

Background: Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy. Methods: RESTART was a prospective, randomised, open-label, blinded-endpoint, parallel-group trial at 122 hospitals in the UK that assessed whether starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. For this prespecified subgroup analysis, consultant neuroradiologists masked to treatment allocation reviewed brain CT or MRI scans performed before randomisation to confirm participant eligibility and rate features of the intracerebral haemorrhage and surrounding brain. We followed participants for primary (recurrent symptomatic intracerebral haemorrhage) and secondary (ischaemic stroke) outcomes for up to 5 years (reported elsewhere). For this report, we analysed eligible participants with intracerebral haemorrhage according to their treatment allocation in primary subgroup analyses of cerebral microbleeds on MRI and in exploratory subgroup analyses of other features on CT or MRI. The trial is registered with the ISRCTN registry, number ISRCTN71907627. Findings: Between May 22, 2013, and May 31, 2018, 537 participants were enrolled, of whom 525 (98%) had intracerebral haemorrhage: 507 (97%) were diagnosed on CT (252 assigned to start antiplatelet therapy and 255 assigned to avoid antiplatelet therapy, of whom one withdrew and was not analysed) and 254 (48%) underwent the required brain MRI protocol (122 in the start antiplatelet therapy group and 132 in the avoid antiplatelet therapy group). There were no clinically or statistically significant hazards of antiplatelet therapy on recurrent intracerebral haemorrhage in primary subgroup analyses of cerebral microbleed presence (2 or more) versus absence (0 or 1) (adjusted hazard ratio [HR] 0·30 [95% CI 0·08–1·13] vs 0·77 [0·13–4·61]; pinteraction=0·41), cerebral microbleed number 0–1 versus 2–4 versus 5 or more (HR 0·77 [0·13–4·62] vs 0·32 [0·03–3·66] vs 0·33 [0·07–1·60]; pinteraction=0·75), or cerebral microbleed strictly lobar versus other location (HR 0·52 [0·004–6·79] vs 0·37 [0·09–1·28]; pinteraction=0·85). There was no evidence of heterogeneity in the effects of antiplatelet therapy in any exploratory subgroup analyses (all pinteraction>0·05). Interpretation: Our findings exclude all but a very modest harmful effect of antiplatelet therapy on recurrent intracerebral haemorrhage in the presence of cerebral microbleeds. Further randomised trials are needed to replicate these findings and investigate them with greater precision. Funding: British Heart Foundation