Meeting local information needs with ASCS and PSS SACE data

Blog summarising the key findings from the case study of further analysis, conducted with three local authorities during the fact-finding phase of the MAX project, which identified three local practices that maximised the local relevance and value of survey data: adding questions to the surveys, conducting further analysis and drawing on supplementary sources of data

How can MAX help local authorities to use social care data to inform local policy? Maximising the value of survey data in adult social care [MAX] project [Full report]

Executive summary of the MAX working paper - How can MAX help local authorities to use social care data to inform local policy? Maximising the value of survey data in adult social care [MAX] projec

Integrated whole transcriptome and DNA methylation analysis identifies gene networks specific to late-onset Alzheimer’s disease

Previous transcriptome studies observed disrupted cellular processes in late-onset Alzheimer\u27s disease (LOAD), yet it is unclear whether these changes are specific to LOAD, or are common to general neurodegeneration. In this study, we address this question by examining transcription in LOAD and comparing it to cognitively normal controls and a cohort of disease controls. Differential transcription was examined using RNA-seq, which allows for the examination of protein coding genes, non-coding RNAs, and splicing. Significant transcription differences specific to LOAD were observed in five genes: C10orf105, DIO2, a lincRNA, RARRES3, and WIF1. These findings were replicated in two independent publicly available microarray data sets. Network analyses, performed on 2,504 genes with moderate transcription differences in LOAD, reveal that these genes aggregate into seven networks. Two networks involved in myelination and innate immune response specifically correlated to LOAD. FRMD4B and ST18, hub genes within the myelination network, were previously implicated in LOAD. Of the five significant genes, WIF1 and RARRES3 are directly implicated in the myelination process; the other three genes are located within the network. LOAD specific changes in DNA methylation were located throughout the genome and substantial changes in methylation were identified within the myelination network. Splicing differences specific to LOAD were observed across the genome and were decreased in all seven networks. DNA methylation had reduced influence on transcription within LOAD in the myelination network when compared to both controls. These results hint at the molecular underpinnings of LOAD and indicate several key processes, genes, and networks specific to the disease

Further analysis of ASCS and PSS SACE data: Case studies of local authority (LA) practice

The Maximising the value of survey data in adult social care (MAX) project aims to develop toolkits, with local authority (LA) staff where possible, to encourage and support LAs to make more use of data drawn from the ASCS and PSS SACE1 to inform local policy and practice. The initial fact-finding phase (MAX Phase 1) activities aimed to:learn more about how LAs currently use ASCS and PSS SACE data, including identifying local practices and barriers; identify potential uses of the data to inform local decision-making; and inform the development of a toolkit to support LAs to make better local use of the data. Along with two analysis and interpretation consultation panel workshops conducted early in the second phase of the project, 139 staff from 95 LAs have so far taken part in MAX. In summary, the findings from these activities demonstrate that LAs generally seem to value the ASCS and PSS SACE and, to some extent, are using the views of service users and carers to inform local service planning and delivery. However, there were several challenges. One of these, identified by just over half of the LAs, concerned analysing the survey data and interpreting the findings to address local questions. A number of barriers seem to underlie this challenge, including difficulties with: identifying local information needs; managing and analysing ASCS and PSS SACE data; and being allocated sufficient time to conduct further analysis. While some LAs find analysing ASCS and PSS SACE data challenging, others are carrying out local statistical analysis, over and above those required for national (ASCOF) reporting. The case studies reported here describe how three local authorities have used and analysed the ASCS and PSS SACE data to support local decision-making. In turn, the case studies will be used to inform the development of ‘how to’ guides and tools to help LAs analyse and interpret survey data, as well as report and interpret analysis finding

Individual placement and support versus individual placement and support enhanced with work-focused cognitive behaviour therapy: feasibility study for a randomised controlled trial

Introduction: Employment is a key goal for many people with long-term mental health issues. Evidence-based individual placement and support is a widely advocated approach. This study explored whether individual placement and support outcomes could be enhanced with work-focused counselling. Method: The study was designed as a pragmatic randomised controlled trial comparing the cost-effectiveness, in severe mental illness, of work-focused intervention (intervention) as an adjunct to individual placement and support compared to individual placement and support alone (control). Results: The original sample (330) proved impossible to attain so the design was revised to a pilot study from which information on feasibility of a full trial could be drawn. Twenty-five individuals out of 74 found paid work but no difference was found in the mean number of hours in paid employment between the intervention and control groups. Conclusion: Results demonstrate that delivering work-focused counselling in tandem with individual placement and support is feasible and acceptable to service users. The study observed that, even during a period of recession (2010–13), individuals with mental health problems succeeded in obtaining paid employment. Any additional benefit of counselling over individual placement and support alone could not be ascertained, due mainly to the high drop-out rate from this study

A mobile phone app to support young people in making shared decisions in therapy (Power Up): study protocol

Background: Evidence suggests that young people want to be active participants in their care and involved in decisions about their treatment. However, there is a lack of digital shared decision-making tools available to support young people in child and adolescent mental health services (CAMHS). Objective: The primary aim of this paper is to present the protocol of a feasibility trial for Power Up, a mobile phone app to empower young people in CAMHS to make their voices heard and participate in decisions around their care. Methods: In the development phase, 30 young people, parents, and clinicians will take part in interviews and focus groups to elicit opinions on an early version of the app. In the feasibility testing phase, 60 young people from across 7 to 10 London CAMHS sites will take part in a trial looking at the feasibility and acceptability of measuring the impact of Power Up on shared decision making. Results: Data collection for the development phase ended in December 2016. Data collection for the feasibility testing phase will end in December 2017. Conclusions: Findings will inform the planning of a cluster controlled trial and contribute to the development and implementation of a shared decision-making app to be integrated into CAMHS

The engagement of young people in their own advance care planning process: a systematic narrative synthesis.

Background: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people’s wishes. Aim: To identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process. Design: A systematic narrative synthesis according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using a quality assessment framework previously used in similar research. Data sources: CINAHL Complete, MEDLINE, PubMed and PsycINFO were searched for articles published between 1 January 1990 and 31 October 2017. Grey literature was searched using Google Scholar and Open Grey. Results: Most studies related to the engagement of young people were conducted in hospitals or other institutions. Research reported not only the aim to include young people in their own advance care planning but also potential barriers to engagement. Barriers include poor communication, conflict within relationships of those in the planning process and patchy education and training for healthcare professionals. Some existing studies are characterised by a lack of rigorous, high-quality research, limiting their impact. Conclusion: Irrespective of setting, engagement of young people would benefit their advance care planning. More detailed, high-quality research is needed to understand the extent of the barriers to young people’s engagement in their own advance care plan and how to facilitate their involvement.</p

Risk stratification of Barrett's oesophagus using a non-endoscopic sampling method coupled with a biomarker panel: a cohort study

Background Barrett's oesophagus predisposes to adenocarcinoma. However, most patients with Barrett's oesophagus will not progress and endoscopic surveillance is invasive, expensive, and fraught by issues of sampling bias and the subjective assessment of dysplasia. We investigated whether a non-endoscopic device, the Cytosponge, could be coupled with clinical and molecular biomarkers to identify a group of patients with low risk of progression suitable for non-endoscopic follow-up. Methods In this multicentre cohort study (BEST2), patients with Barrett's oesophagus underwent the Cytosponge test before their surveillance endoscopy. We collected clinical and demographic data and tested Cytosponge samples for a molecular biomarker panel including three protein biomarkers (P53, c-Myc, and Aurora kinase A), two methylation markers (MYOD1 and RUNX3), glandular atypia, and TP53 mutation status. We used a multivariable logistic regression model to compute the conditional probability of dysplasia status. We selected a simple model with high classification accuracy and applied it to an independent validation cohort. The BEST2 study is registered with ISRCTN, number 12730505. Findings The discovery cohort consisted of 468 patients with Barrett's oesophagus and intestinal metaplasia. Of these, 376 had no dysplasia and 22 had high-grade dysplasia or intramucosal adenocarcinoma. In the discovery cohort, a model with high classification accuracy consisted of glandular atypia, P53 abnormality, and Aurora kinase A positivity, and the interaction of age, waist-to-hip ratio, and length of the Barrett's oesophagus segment. 162 (35%) of 468 of patients fell into the low-risk category and the probability of being a true non-dysplastic patient was 100% (99% CI 96–100) and the probability of having high-grade dysplasia or intramucosal adenocarcinoma was 0% (0–4). 238 (51%) of participants were classified as of moderate risk; the probability of having high-grade dysplasia was 14% (9–21). 58 (12%) of participants were classified as high-risk; the probability of having non-dysplastic endoscopic biopsies was 13% (5–27), whereas the probability of having high-grade dysplasia or intramucosal adenocarcinoma was 87% (73–95). In the validation cohort (65 patients), 51 were non-dysplastic and 14 had high-grade dysplasia. In this cohort, 25 (38%) of 65 patients were classified as being low-risk, and the probability of being non-dysplastic was 96·0% (99% CI 73·80–99·99). The moderate-risk group comprised 27 non-dysplastic and eight high-grade dysplasia cases, whereas the high-risk group (8% of the cohort) had no non-dysplastic cases and five patients with high-grade dysplasia. Interpretation A combination of biomarker assays from a single Cytosponge sample can be used to determine a group of patients at low risk of progression, for whom endoscopy could be avoided. This strategy could help to avoid overdiagnosis and overtreatment in patients with Barrett's oesophagus. Funding Cancer Research UK