The lived experience of Quality of Life (QOL) in relation to dementia progression

Measuring the quality of life (QOL) of individuals who live with long-term health conditions and illnesses has become more important in the absence of cure (Department of Health [DoH], 2013). Dementia is an intractable, progressive and terminal illness and recent research from the Alzheimer’s Society (2012) has highlighted that a large proportion of those with dementia report that they do not live well with dementia and indicates the impact of this on QOL. Historically, there was an assumption that individuals living with dementia, due to their cognitive impairment, were unable to comment and talk about their QOL, however more recent research has shown that this is not the case (Woods, 2012). There are a number of ways in which QOL can be explored. For example, a number of scales have been developed which can collect information through a variety of methods including: self-report (e.g., Dementia Quality Of Life: Brod, Stewart, Sands, & Walton, 1999), report by-proxy (e.g., Alzheimer’s Disease Health-Related Quality Of Life: Rabins, Kasper, Kleinman, Black, & Patrick, 1999), observational (e.g., Dementia Care Mapping: Kitwood & Bredin, 1992) or through a combination of such methods. Quality of life is highly subjective and this poses challenges for the collection of information about QOL. Numerous studies have highlighted the discrepancy between self-report and proxy report QOL scores (for a review see Ettema et al., 2005), and difficulties with observational methods such as observer bias are evident. Such observations suggest that self-report, where possible, is the gold standard for the measurement of QOL (Cahill & Diaz Ponce, 2011), although this is also not without difficulty (Ettema et al., 2005). Self-report scales of QOL for those living with dementia certainly have their utility; however, the application of such scales for those with advanced dementia seems variable. This may partly be due to the loss of verbal communication and understanding (Johnson et al., 2009). This is further explored as the main focus of the narrative review which discusses and critiques the body of research which has been published in the last ten years which has focused on the self-report of QOL. The studies reported in the review; three quantitative articles and three qualitative articles discuss different methods for the collection of information regarding QOL from those individuals living with dementia. Findings from the review suggest that whilst self-report scales for QOL can be highly useful and effective, it seems their most effective use is with individuals who have mild to moderate dementia (Karim, Ramanna, Petit, Doward, & Burns, 2008; Trigg, Jones, & Skevington, 2007a; Trigg, Skevington, & Jones, 2007b). Some studies included in the review reported the inclusion of participants with advanced dementia. However, it would seem that participants with advanced dementia are more likely to struggle answering some questions, leading to missing values: a similar observation was reported by Ettema et al. (2005). The review highlights, therefore, the growing need for accurate self-report measurement of QOL for those with advanced dementia. The qualitative studies reviewed indicated that interviews employing semi-structured or unstructured frameworks could be successful in gaining meaningful information from those living with advanced dementia about their QOL (Clare, Rowlands, Bruce, Surr, & Downs, 2008; Cahill & Diaz-Ponce, 2011). It seemed as though there were numerous advantages from using a qualitative method for collecting information from those living with dementia, and therefore this was the methodology adopted in the study. The empirical study invited participants to think about their QOL in the context of their diagnosis of dementia and to also consider their expected future QOL in light of advancing dementia. Given some of the challenges of communication from those with advanced dementia, the study recruited those with mild to moderate dementia to think about the future. Thinking about the future of dementia was anticipated to be highly emotive and potentially very distressing for participants, therefore through the use of one-to-one interviews, participants could be asked difficult and challenging questions sensitively. Participants described factors which impacted on their QOL such as reciprocal relationships, impact of skill loss and being supported by relatives. However, thinking about the future seemed more challenging for the participants. Some participants did express fear and uncertainty when asked to think about the future, and this was something that the majority of participants did not want to do. However, some participants expressed difficulties which their spouse or partner had when it came to considering the future and the terminal nature of the dementia. For some participants, having such conversations may be important and not doing so could be detrimental to QOL. This was discussed in the professional report for healthcare professionals, amongst other recommendations and clinical implications from the findings of the current study. Perhaps some of the fear and uncertainty generated by thinking about the future in terms of dementia, which the participants expressed, was related to stigma and misperceptions about dementia. There is little research on the impact of stigma for those living with dementia (Mukadam & Livingston, 2012), most of the research is focused on psychosis (schizophrenia) and therefore, exploring stigma in the context of dementia was considered as a direction for future research. In the Dementia Strategy, the DoH (2009) drew attention to stigma and the social awareness of dementia; this has remained a matter of interest for the current government, reflected in multimedia advertising and other campaigns. Future research based on the findings of the current study, might focus upon ways in which stigma and the misperceptions about dementia could be further explored

The role of community health workers in the surgical cascade: A scoping review

BACKGROUND: Community health workers (CHWs) can increase access to various primary healthcare services; however, their potential for improving surgical care is under-explored. We sought to assess the role of CHWs in the surgical cascade, defined as disease screening, linkage to operative care, and post-operative care. Given the well-described literature on CHWs and screening, we focused on the latter two steps of the surgical cascade. METHODS: We conducted a scoping review of the peer-reviewed literature. We searched for studies published in any language from January 1, 2000 to May 1, 2020 using electronic literature databases including Pubmed/MEDLINE, Web of Science, SCOPUS, and Google Scholar. We included articles on CHW involvement in linkage to operative care and/or post-operative surgical care. Narrative and descriptive methods were used to analyze the data. RESULTS: The initial search identified 145 articles relevant to steps in the surgical cascade. Ten studies met our inclusion criteria and were included for review. In linkage to care, CHWs helped increase surgical enrollment, provide resources for vulnerable patients, and build trust in healthcare services. Post-operatively, CHWs acted as effective monitors for surgical-site infections and provided socially isolated patients with support and linkage to additional services. The complex and wide-ranging needs of surgical patients illustrated the need to view surgical care as a continuum rather than a singular operative event. CONCLUSION: While the current literature is limited, CHWs were able to maneuver complex medical, cultural, and social barriers to surgical care by linking patients to counseling, education, and community resources, as well as post-operative infection prevention services. Future studies would benefit from more rigorous study designs and larger sample sizes to further elucidate the role CHWs can serve in the surgical cascade

Small heat-shock proteins interact with a flanking domain to suppress polyglutamine aggregation

Small heat-shock proteins (sHsps) are molecular chaperones that play an important protective role against cellular protein misfolding by interacting with partially unfolded proteins on their off-folding pathway, preventing their aggregation. Polyglutamine (polyQ) repeat expansion leads to the formation of fibrillar protein aggregates and neuronal cell death in nine diseases, including Huntington disease and the spinocerebellar ataxias (SCAs). There is evidence that sHsps have a role in suppression of polyQ-induced neurodegeneration; for example, the sHsp alphaB-crystallin (αB-c) has been identified as a suppressor of SCA3 toxicity in a Drosophila model. However, the molecular mechanism for this suppression is unknown. In this study we tested the ability of αB-c to suppress the aggregation of a polyQ protein. We found that αB-c does not inhibit the formation of SDS-insoluble polyQ fibrils. We further tested the effect of αB-c on the aggregation of ataxin-3, a polyQ protein that aggregates via a two-stage aggregation mechanism. The first stage involves association of the N-terminal Josephin domain followed by polyQ-mediated interactions and the formation of SDS-resistant mature fibrils. Our data show that αB-c potently inhibits the first stage of ataxin-3 aggregation; however, the second polyQ-dependent stage can still proceed. By using NMR spectroscopy, we have determined that αB-c interacts with an extensive region on the surface of the Josephin domain. These data provide an example of a domain/region flanking an amyloidogenic sequence that has a critical role in modulating aggregation of a polypeptide and plays a role in the interaction with molecular chaperones to prevent this aggregation

Engaging Opportunities: Connecting young people with contemporary research and researchers

This is the final report for ‘Engaging Opportunities’, an RCUK-funded School-University Partnership between the Open University and the Denbigh Teaching School Alliance. Informed by action research, this four-year project was designed to create structured, strategic, sustainable and equitable mechanisms for effective school-university engagement with research. The report describes an evidence-based strategy designed to embed school-university engagement with research within the University’s strategic planning for research and the operational practices of researchers. Through the early stages of our partnership we noted a lack of suitable planning tools that work for researchers, teachers and students. We therefore introduced a flexible and adaptable framework of four types of activity—open lectures, open dialogues, open inquiry and open creativity—combined with an upstream approach to planning based on a set of six principles. A sub-set of these activities were evaluated through a combination of surveys, interviews and interventions. In conclusion, we argue that institutional and professional cultures can be resistant to the prospect of fully embedding school-university engagement with research in a structured, strategic and sustainable manner, and offer suggestions for how this context could and should be changed

Creating a Next Generation Phenotype Library : the health data research UK Phenotype Library

Open Access via the OUP AgreementPeer reviewe

Group 2 Innate Lymphoid Cells Exhibit Tissue-Specific Dynamic Behaviour During Type 2 Immune Responses.

Group 2 innate lymphoid cells (ILC2s) are early effectors of mucosal type 2 immunity, producing cytokines such as interleukin (IL)-13 to mediate responses to helminth infection and allergen-induced inflammation. ILC2s are also present in lymph nodes (LNs) and can express molecules required for antigen presentation, but to date there are limited data on their dynamic behaviour. We used a CD2/IL-13 dual fluorescent reporter mouse for in vivo imaging of ILC2s and Th2 T cells in real time following a type 2 priming helminth infection or egg injection. After helminth challenge, we found that ILC2s were the main source of IL-13 in lymphoid organs (Peyer's patches and peripheral LNs), and were located in T cell areas. Intravital imaging demonstrated an increase in IL-13+ ILC2 size and movement following helminth infection, but reduced duration of interactions with T cells compared with those in homeostasis. In contrast, in the intestinal mucosa, we observed an increase in ILC2-T cell interactions post-infection, including some of prolonged duration, as well as increased IL-13+ ILC2 movement. These data suggest that ILC2 activation enhances cell motility, with the potential to increase the area of distribution of cytokines to optimise the early generation of type 2 responses. The prolonged ILC2 interactions with T cells within the intestinal mucosa are consistent with the conclusion that contact-based T cell activation may occur within inflamed tissues rather than lymphoid organs. Our findings have important implications for our understanding of the in vivo biology of ILC2s and the way in which these cells facilitate adaptive immune responses

A large-scale examination of the effectiveness of anonymous marking in reducing group performance differences in higher education assessment

The present research aims to more fully explore the issues of performance differences in higher education assessment, particularly in the context of a common measure taken to address them. The rationale for the study is that, while performance differences in written examinations are relatively well researched, few studies have examined the efficacy of anonymous marking in reducing these performance differences, particularly in modern student populations. By examining a large archive (N = 30674) of assessment data spanning a twelve-year period, the relationship between assessment marks and factors such as ethnic group, gender and socio-environmental background was investigated. In particular, analysis focused on the impact that the implementation of anonymous marking for assessment of written examinations and coursework has had on the magnitude of mean score differences between demographic groups of students. While group differences were found to be pervasive in higher education assessment, these differences were observed to be relatively small in practical terms. Further, it appears that the introduction of anonymous marking has had a negligible effect in reducing them. The implications of these results are discussed, focusing on two issues, firstly a defence of examinations as a fair and legitimate form of assessment in Higher Education, and, secondly, a call for the re-examination of the efficacy of anonymous marking in reducing group performance differences

Progression of diabetes retinal status within community screening programmes and potential implications for screening intervals

Objective This study aimed to follow the natural progression of retinal changes in patients with diabetes. Such information should inform decisions with regard to the screening intervals for such patients Research Design and Methods An observational study was undertaken linking the data from seven diabetes retinal screening programmes across the UK for retinal grading results between 2005 and 2012. Patients with absent or background retinopathy were followed up for progression to the endpoints referable retinopathy, and treatable retinopathy (proliferative retinopathy). Results In total 354,549 patients were observed for up to four years during which 16,196 progressed to referable retinopathy. Of patients with no retinopathy in either eye for two successive screening episodes at least 12 months apart between 0.3 (95% confidence interval 0.3-0.8)% and 1.3 (1.0-1.6)% progressed to referable retinopathy and rates of treatable eye disease were less than 0.3% at two years. The corresponding progression rates for patients with bilateral background retinopathy in successive screening episodes was 13-29% and up to 4% respectively in the different programmes. Conclusions It may be possible to risk stratify patients according to baseline retinal criteria into low and high risk of progressing to proliferative retinopathy. Screening intervals for such diverse groups of patients could safely be modified according to their risk