Evidence of the effectiveness and patient experience of formalised social support for people with a diagnosis of heart failure.

Final report to Chest, Heart & Stroke Scotland. This systematic review was undertaken during December 2014 to June 2015, andwas commissioned by Chest, Heart and Stroke Scotland (CHSS). The review teamcomprised of systematic review experts, and experts in heart failure and/orloneliness

Evidence of the effectiveness and patient experience of formalised social support for people with a diagnosis of heart failure.

Final report to Chest, Heart & Stroke Scotland. This systematic review was undertaken during December 2014 to June 2015, andwas commissioned by Chest, Heart and Stroke Scotland (CHSS). The review teamcomprised of systematic review experts, and experts in heart failure and/orloneliness

Leadership in compassionate care programme: final report.

The Leadership in Compassionate Care programme is a collaborative venture between Edinburgh Napier University and NHS Lothian and is supported by a generous benefactor. The aim of the 3 year project is to ensure that compassionate nursing practice is integral to care within NHS Lothian and within the undergraduate nursing programme at Napier University. An important part of this programme is to disseminate both the learning and outcomes to other organisations.The programme has 4 key strands which are: Embedding the principles of Compassionate Care with in the undergraduate curriculum. Supporting newly qualified nurses during their first year in practice to facilitate the transition from student to competent and compassionate staff nurse. Establishing NHS Lothian centres of excellence in Compassionate Care – called Beacon Wards. Supporting development of leadership skills in Compassionate Care in NHS Lothian

Global Retinoblastoma Presentation and Analysis by National Income Level.

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

Effects of Anacetrapib in Patients with Atherosclerotic Vascular Disease

BACKGROUND: Patients with atherosclerotic vascular disease remain at high risk for cardiovascular events despite effective statin-based treatment of low-density lipoprotein (LDL) cholesterol levels. The inhibition of cholesteryl ester transfer protein (CETP) by anacetrapib reduces LDL cholesterol levels and increases high-density lipoprotein (HDL) cholesterol levels. However, trials of other CETP inhibitors have shown neutral or adverse effects on cardiovascular outcomes. METHODS: We conducted a randomized, double-blind, placebo-controlled trial involving 30,449 adults with atherosclerotic vascular disease who were receiving intensive atorvastatin therapy and who had a mean LDL cholesterol level of 61 mg per deciliter (1.58 mmol per liter), a mean non-HDL cholesterol level of 92 mg per deciliter (2.38 mmol per liter), and a mean HDL cholesterol level of 40 mg per deciliter (1.03 mmol per liter). The patients were assigned to receive either 100 mg of anacetrapib once daily (15,225 patients) or matching placebo (15,224 patients). The primary outcome was the first major coronary event, a composite of coronary death, myocardial infarction, or coronary revascularization. RESULTS: During the median follow-up period of 4.1 years, the primary outcome occurred in significantly fewer patients in the anacetrapib group than in the placebo group (1640 of 15,225 patients [10.8%] vs. 1803 of 15,224 patients [11.8%]; rate ratio, 0.91; 95% confidence interval, 0.85 to 0.97; P=0.004). The relative difference in risk was similar across multiple prespecified subgroups. At the trial midpoint, the mean level of HDL cholesterol was higher by 43 mg per deciliter (1.12 mmol per liter) in the anacetrapib group than in the placebo group (a relative difference of 104%), and the mean level of non-HDL cholesterol was lower by 17 mg per deciliter (0.44 mmol per liter), a relative difference of -18%. There were no significant between-group differences in the risk of death, cancer, or other serious adverse events. CONCLUSIONS: Among patients with atherosclerotic vascular disease who were receiving intensive statin therapy, the use of anacetrapib resulted in a lower incidence of major coronary events than the use of placebo. (Funded by Merck and others; Current Controlled Trials number, ISRCTN48678192 ; ClinicalTrials.gov number, NCT01252953 ; and EudraCT number, 2010-023467-18 .)

A review of the effectiveness and meaningfulness of education interventions to enable children, young people and their families to self-care for their gastrostomy tubes in the community.

A systematic review of qualitative and quantitative evidence of the effectiveness and meaningfulness of education interventions to enable children, young people and their families to self-care for their gastrostomy tubes in the communit

A review of the effectiveness and meaningfulness of education interventions to enable children, young people and their families to self-care for their gastrostomy tubes in the community.

A systematic review of qualitative and quantitative evidence of the effectiveness and meaningfulness of education interventions to enable children, young people and their families to self-care for their gastrostomy tubes in the communit

Systematic review of grading practice: Is there evidence of grade inflation?

Systematic Review of Grading Practice: Is there evidence of grade inflation? This paper describes the outcomes of a systematic review of literature pertaining to the grading of practice within nursing, midwifery, medicine and allied health professions. From a total of 215 papers, 147 were included and data were extracted using a systematic data extraction tool. The focus of this paper relates to one of the emerging themes: the issue of grade inflation. The paper examines the grade inflation phenomenon: it discusses the reasons for grade inflation from a variety of perspectives. The paper reports on the suggestions made within the literature on how to control grade inflation, but these, the authors conclude, are not fully evaluated and should be adopted only where rigorous evaluation can carried out. It is imperative that evaluations include the usefulness, reliability and validity testing of rubrics or any other solutions to grade inflation that are adopted by clinicians and educators

Literature review exploring issues of service user and carer involvement in the assessment of students’ practice.

Executive SummaryThis literature review focuses on exploring issues of service users and carer involvement in the assessment of students‟ practice. Recommendations are made to inform the development of a National Approach to Practice Assessment for the pre-registration Nursing and Midwifery programmes in Scotland.Objectives of the Literature Review Undertake a literature / evidence review that focuses on exploring issues of service user and carer involvement in the assessment of students‟ practice. Make recommendations based on the above review to inform the National Approach Working Group in formulating guidance to Higher Education Institutions around service user and carer involvement in the assessment of students‟ practice.Literature reviewLiterature was collected following a systematic search and spanned across 17 lay and professional groups. In total a 212 articles were reviewed following application of exclusion criteria. Sixty six papers were finally selected as fully meeting the inclusion criteria. Of these there was a varied and wide ranging use of research methods as well as guidelines / tools and more descriptive / opinion based articles. The most common were descriptive / opinion based, followed by guidelines and tools thus underlining the often reported dearth of evidence based literature in the area of the involvement of service users and carers in the assessment of students‟ practice.Findings from the literature reviewFollowing a brief overview of the contextual background, definition of terms and an outline of the continuum of involvement, the findings from the literature review addressed the following areas: The challenges and barriers to the involvement of service users and carers focusing on the hierarchies within Higher Education; the use of superiority as a barrier; and using excuses as a barrier. This is followed by a discussion related to assessment methodologies including assessment methods and processes; issues related to reliability, quality and the context of assessment. The next section addresses the impact of involvement on students, service users and carers which includes an exploration of the benefits of service user and carer involvement in the assessment of students‟ practice; and the reactions and views of service users, students and staff. Finally the implications for training and support are explored.Conclusions and recommendationsThere are a number of recommendations and advice offered in the literature. Only those specific to the involvement of service users and carers in the assessment of students‟ practice are presented here.The culture in which service users and carers are involved in the assessment process must be commensurate with the aims and purpose of such participation. This therefore requires involvement of all those involved (including practice placement personnel), agreement and dissemination of the vision or purpose; two-way communication; setting of ground rules including the ability to challenge the use of jargon and the provision of a supportive environment where service users and carers feel safe to share any concerns or anxieties that they may have (Tew et al. 2004; Basset et al. 2006; Duxbury & Ramsdale 2007; Masters & Forrest unpublished).Training and support is fundamental to the success of service user and carer involvement. Levin (2004); Speers (2008) and Masters & Forrest (unpublished) recommend ensuring that the involvement of service users and carers in the assessment of students‟ is not seen to be coercive but rather an opt in or opt out process. Anghel & Ramon (2009) emphasise the need for support not just for service users and carers but also academic and practice staff.A number of authors recommend the development and use of protocols and guidance in order to provide structure for all those involved (Shennan 1998; Edwards 2003; Speers 2008; Anghel & Ramon 2009; Branfield 2009; Stickley et al. 2010) which should hopefully help with consistency in the assessment process. Levin (2004) suggests that any assessment tool should start from the service users‟ perspective as opposed to using „trigger questions‟ related to competencies. Stickley et al. (in press) discuss the development of a service user designed assessment tool (SUSA© – Service User Student Assessment) which over a number of weeks evolved into containing four categories: attitude; communication skills; personal awareness and knowledge. A Likert scale is consistently used to elicit responses and there is sufficient room for individual comment. The tool also contains a glossary of terms for the service user / carer.In terms of the processes involved, recommendations are multifaceted: Consider the terminology used – Stickley et al. (2010) and (in press) suggest referring to service user and carer „assessment‟ of students‟ practice as reviewing rather than assessing. The rationale for this is that the term reviewer addresses students‟ complaints of feeling disempowered and thus the feedback is less likely to be rejected outright.Literature Review: Involvement of Service Users & Carers in the Assessment of Students‟ Practice Page 7 Provide service users and carers with written information that they can read it and retain for future information. Information should include the “reason for seeking feedback; how it will be used and how long any forms or recordings will be kept” (Edwards 2003: 347). Speers (2008) adds that confidentiality in terms of the feedback should also be addressed. Service user / carer feedback should be used to enhance the learning experience (Levin 2004). Service user / carer feedback should be mandatory in all practice assessments (Levin 2004) The selection of the service user / carer from which feedback will be elicited should be a joint process between the mentor / practice teacher and the student. It should not be the student‟s selection alone (Levin 2004; Masters & Forrest unpublished). Stickley et al. (in press) advise using informal processes (such as witness statements, reflective writing and other portfolio items) to elicit service user / carer feedback. They warn that using more formal mechanisms will require planned training in forming and giving feedback. Furthermore they suggest that using a more formalised procedure may need mentor involvement to aid the feedback process.In conclusion, the consensus within the literature is to involve service users and carers in the formative feedback (or review) of students in the practice setting. The use of protocols and structured easily understood and implemented tools are recommended as is the inclusive and appropriate level of engagement training for all stakeholders involved in the process.Both Masters & Forrest (unpublished) and Stickley et al. (in press) identify that further research is required into the manner in which feedback is obtained from service users and carers and how it is then used to inform and enhance the learning process