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

Age-related Effects on Social Cognition in Adults with Autism Spectrum Disorder: A Possible Protective Effect on Theory of Mind

Impaired social cognition has been suggested to underlie the social communication difficulties that define autism spectrum disorder (ASD). In typical development, social cognition may deteriorate in older age, but age effects in ASD adults have been little explored. In the present study, we compared groups of younger and older adults with and without ASD (n = 97), who completed a set of social cognition tasks assessing theory of mind (ToM), and self‐report measures of empathy and alexithymia. While typically developing (TD) younger adults outperformed elderly TD and younger ASD participants, younger and older ASD adults did not differ in their ToM performance, and the elderly ASD and TD groups performed equivalently. By contrast, ASD adults reported lower empathy scores and higher levels of alexithymia symptoms compared to TD adults regardless of age. The difference between ASD and TD groups in self‐reported empathy scores was no longer significant when alexithymia was covaried (with the exception of the Perspective Taking subscore). Results suggest a possible age‐protective effect on ToM in the ASD group. In addition, empathy difficulties appear to be associated with alexithymia rather than ASD per se. Possible interpretations are discussed, and future directions for autism aging research are proposed

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

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

Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time

Parents' responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician‐parent interactions and implications for clinical practice

Background: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio‐recorded consultations the kinds of information they seek. / Methods: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. / Results: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high‐risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents’ desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. / Conclusion: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable