Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: Benchmarking Autism Services Efficacy: BASE Project (Volume 3) Secondary Data analysis

1) Executive Summary
Legislation (Autism Act NI, 2011), a cross-departmental strategy (Autism Strategy 2013-2020) and a first action plan (2013-2016) have been developed in Northern Ireland in order to support individuals and families affected by Autism Spectrum Disorder (ASD) without a prior thorough baseline assessment of need. At the same time, there are large existing data sets about the population in NI that had never been subjected to a secondary data analysis with regards to data on ASD. This report covers the first comprehensive secondary data analysis and thereby aims to inform future policy and practice.
Following a search of all existing, large-scale, regional or national data sets that were relevant to the lives of individuals and families affected by Autism Spectrum Disorder (ASD) in Northern Ireland, extensive secondary data analyses were carried out. The focus of these secondary data analyses was to distill any ASD related data from larger generic data sets. The findings are reported for each data set and follow a lifespan perspective, i.e., data related to children is reported first before data related to adults.
Key findings:
Autism Prevalence:
Of children born in 2000 in the UK,
• 0.9% (1:109) were reported to have ASD, when they were 5-year old in 2005;
• 1.8% (1:55) were reported to have ASD, when they were 7-years old in 2007;
• 3.5% (1:29) were reported to have ASD, when they were 11-year old in 2011.
In mainstream schools in Northern Ireland
• 1.2% of the children were reported to have ASD in 2006/07;
• 1.8% of the children were reported to have ASD in 2012/13.

Economic Deprivation:
• Families of children with autism (CWA) were 9%-18% worse off per week than families of children not on the autism spectrum (COA).
• Between 2006-2013 deprivation of CWA compared to COA nearly doubled as measured by eligibility for free school meals (from near 20 % to 37%)
• In 2006, CWA and COA experienced similar levels of deprivation (approx. 20%), by 2013, a considerable deprivation gap had developed, with CWA experienced 6% more deprivation than COA.
• Nearly 1/3 of primary school CWA lived in the most deprived areas in Northern Ireland.
• Nearly ½ of children with Asperger’s Syndrome who attended special school lived in the most deprived areas.

Unemployment:
• Mothers of CWA were 6% less likely to be employed than mothers of COA.
• Mothers of CWA earned 35%-56% less than mothers of COA.
• CWA were 9% less likely to live in two income families than COA.

Health:
• Pre-diagnosis, CWA were more likely than COA to have physical health problems, including walking on level ground, speech and language, hearing, eyesight, and asthma.
• Aged 3 years of age CWA experienced poorer emotional and social health than COA, this difference increased significantly by the time they were 7 years of age.
• Mothers of young CWA had lower levels of life satisfaction and poorer mental health than mothers of young COA.
Education:
• In mainstream education, children with ASD aged 11-16 years reported less satisfaction with their social relationships than COA.
• Younger children with ASD (aged 5 and 7 years) were less likely to enjoy school, were bullied more, and were more reluctant to attend school than COA.
• CWA attended school 2-3 weeks less than COA .
• Children with Asperger’s Syndrome in special schools missed the equivalent of 8-13 school days more than children with Asperger’s Syndrome in mainstream schools.
• Children with ASD attending mainstream schooling were less likely to gain 5+ GCSEs A*-C or subsequently attend university.



Further and Higher Education:
• Enrolment rates for students with ASD have risen in Further Education (FE), from 0% to 0.7%.
• Enrolment rates for students with ASD have risen in Higher Education (HE), from 0.28% to 0.45%.
• Students with ASD chose to study different subjects than students without ASD, although other factors, e.g., gender, age etc. may have played a part in subject selection.
• Students with ASD from NI were more likely than students without ASD to choose Northern Irish HE Institutions rather than study outside NI.

Participation in adult life and employment:
• A small number of adults with ASD (n=99) have benefitted from DES employment provision over the past 12 years.
• It is unknown how many adults with ASD have received employment support elsewhere (e.g. Steps to Work).
•
Awareness and Attitudes in the General Population:
• In both the 2003 and 2012 NI Life and Times Survey (NILTS), NI public reported positive attitudes towards the inclusion of children with ASD in mainstream education (see also BASE Project Vol. 2).

Gap Analysis Recommendations:
This was the first comprehensive secondary analysis with regards to ASD of existing large-scale data sets in Northern Ireland. Data gaps were identified and further replications would benefit from the following data inclusion:
• ASD should be recorded routinely in the following datasets:
o Census;
o Northern Ireland Survey of Activity Limitation (NISALD);
o Training for Success/Steps to work; Steps to Success;
o Travel survey;
o Hate crime; and
o Labour Force Survey.
• Data should be collected on the destinations/qualifications of special school leavers.
• NILT Survey autism module should be repeated in 5 years time (2017) (see full report of 1st NILT Survey autism module 2012 in BASE Project Report Volume 2).
• General public attitudes and awareness should be assessed for children and young people, using the Young Life and Times Survey (YLT) and the Kids Life and Times Survey (KLT); (this work is underway, Dillenburger, McKerr, Schubolz, & Lloyd, 2014-2015).
 

Defining the role of common variation in the genomic and biological architecture of adult human height

Using genome-wide data from 253,288 individuals, we identified 697 variants at genome-wide significance that together explained one-fifth of the heritability for adult height. By testing different numbers of variants in independent studies, we show that the most strongly associated 1/42,000, 1/43,700 and 1/49,500 SNPs explained 1/421%, 1/424% and 1/429% of phenotypic variance. Furthermore, all common variants together captured 60% of heritability. The 697 variants clustered in 423 loci were enriched for genes, pathways and tissue types known to be involved in growth and together implicated genes and pathways not highlighted in earlier efforts, such as signaling by fibroblast growth factors, WNT/I 2-catenin and chondroitin sulfate-related genes. We identified several genes and pathways not previously connected with human skeletal growth, including mTOR, osteoglycin and binding of hyaluronic acid. Our results indicate a genetic architecture for human height that is characterized by a very large but finite number (thousands) of causal variants.

Applying the recovery approach to the interface between mental health and child protection services

There are a range of theoretical approaches which may inform the interface between child protection and adult mental health services. These theoretical perspectives tend to be focused on either child protection or mental health with no agreed integrating framework. The interface continues to be identified, in research, case management reviews and inquiry reports, as complex and problematic. This paper proposes that more positive, integrated approaches to service user engagement, risk assessment and management may lead to better outcomes in working with families experiencing parental mental health problems and child protection concerns. It is proposed that the recovery approach, increasingly used in mental health services, can inform the processes of engagement, assessment and intervention at the mental health and child protection interface. The article provides a critical overview of the recovery approach and compares it with approaches typifying interventions in child protection work to date. Relevant research and inquiries are also examined as a context for how to more effectively respond to cases where there are issues around parental mental health problems and child protection. The article concludes with case material to illustrate the potential application of the recovery approach to the interface between mental health and child protection services.

Multidimensional rehabilitation programmes for adult cancer survivors

Background: Multidimensional rehabilitation programmes (MDRPs) have developed in response to the growing number of people living with and surviving cancer. MDRPs comprise a physical component and a psychosocial component. Studies of the effectiveness of these programmes have not been reviewed and synthesised.

Objectives: To conduct a systematic review of studies examining the effectiveness of MDRPs in terms of maintaining or improving the physical and psychosocial well-being of adult cancer survivors.

Search methods: We conducted electronic searches in the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, CINAHL and PsychINFO up to February 2012.

Selection criteria: Selection criteria focused on randomised controlled trials (RCTs) of multidimensional interventions for adult cancer survivors. Interventions had to include a physical component and a psychosocial component and to have been carried out on two or more occasions following completion of primary cancer treatment. Outcomes had to be assessed using validated measures of physical health and psychosocial well-being. Non-English language papers were included.

Data collection and analysis: Pairs of review authors independently selected trials, rated their methodological quality and extracted relevant data. Although meta-analyses of primary and secondary endpoints were planned there was a high level of study heterogeneity and only one common outcome measure (SF-36) could be statistically synthesised. In addition, we conducted a narrative analysis of interventions, particularly in terms of inspecting and identifying intervention components, grouping or categorising interventions and examining potential common links and outcomes.

Main results: Twelve RCTs (comprising 1669 participants) met the eligibility criteria. We judged five studies to have a moderate risk of bias and assessed the remaining seven as having a high risk of bias. It was possible to include SF-36 physical health component scores from five studies in a meta-analysis. Participating in a MDRP was associated with an increase in SF-36 physical health component scores (mean difference (MD) 2.22, 95% confidence interval (CI) 0.12 to 4.31, P = 0.04). The findings from the narrative analysis suggested that MDRPs with a single domain or outcome focus appeared to be more successful than programmes with multiple aims. In addition, programmes that comprised participants with different types of cancer compared to cancer site-specific programmes were more likely to show positive improvements in physical outcomes. The most effective mode of service delivery appeared to be face-to-face contact supplemented with at least one follow-up telephone call. There was no evidence to indicate that MDRPs which lasted longer than six months improved outcomes beyond the level attained at six months. In addition, there was no evidence to suggest that services were more effective if they were delivered by a particular type of health professional.

Authors' conclusions: There is some evidence to support the effectiveness of brief, focused MDRPs for cancer survivors. Rigorous and methodologically sound clinical trials that include an economic analysis are required.

Incentives and rewards: what do adult populations truly want? Insights from the physical activity loyalty (PAL) scheme

Background
Trials depend on good recruitment and retention, but efforts to improve these have had varying success. This may be due to inadequate understanding of what participants would value in return for taking part. An opportunity arose in one trial to investigate the incentives that might help recruit and retain participants to another.

Aim
To determine what adults value as an incentive for involvement in a trial.

Methods
In the PAL Scheme, employees used a ‘loyalty card’ to monitor their physical activity over 12 weeks. The incentive group (n=199) collected points and received rewards for physical activity (1 minute = 1 point, max: 30 pts/day). A comparator group (n=207) self-monitored their physical activity only. Points could be redeemed as retail vouchers. 17 different incentives were available, from 75 pts (£2.50, a sandwich) to 1800 pts (£60, 1 month gym membership).

Results
148 of the 199 intervention participants used their card at least once, earning a mean of 374 pts. 121 earned sufficient to collect a reward and 76 redeemed points for vouchers but only 48 exchanged the vouchers for rewards. The most popular reward was not that of highest monetary value: two cinema tickets (300 pts, £10).

Conclusions
The value that participants place on a reward might be more important than its monetary value. Some might appreciate receiving the voucher, without spending it. In choosing incentives to boost trial participation, it may help to allow people to choose from a variety of rewards, rather than reimbursing in money.

Impact of posterior subcapsular opacification on vision and visual function among subjects undergoing cataract surgery in rural China: Study of Cataract Outcomes and Up-Take of Services (SCOUTS) in the Caring is Hip Project, report 5.

AIM: To study the effect of posterior capsular opacification (PCO) on vision and visual function in patients undergoing cataract surgery in rural China, and to compare this with the effect of refractive error. METHODS: Patients undergoing cataract surgery in at least one eye by local surgeons in a rural setting between 8 August and 31 December 2005 were examined with slit lamp grading of PCO 10-14 months after surgery. Subjects with any PCO associated with best-corrected visual acuity of 6/7.5 or worse, or with grade 2+ or worse PCO without visual decrement, were offered YAG laser capsulotomy. Vision and self-reported visual function were assessed, and various demographic and clinical factors potentially associated with PCO were recorded. RESULTS: Of 313 patients operated on within the study window, 239 (76%) could be contacted by telephone; study examinations were performed on 176 (74%). Examined subjects had a mean (SD) age of 69.4 (10.5) years, 116 (67%) were female, and 149 (86%) had been blind (presenting visual acuity < or = 6/60) in the operated eye before surgery. PCO of grade 1 or above was present in 34 of 204 operated eyes (16.7%). Those with PCO had significantly worse presenting vision (p = 0.007) but not visual function (p>0.3) than those without PCO. Women had a significantly higher prevalence of PCO (20.9%) than did men (8.6%, p<0.05). Of 19 eyes undergoing capsulotomy with best-corrected visual acuity measured the next day, 13 (68%) improved by one or more lines, and seven (37%) improved by two or more lines. Despite a higher uptake of capsulotomy (95%) as opposed to refraction (35%) in this cohort, the yield in terms of eyes with poor presenting visual acuity (< 6/18) that could be improved was higher for refraction (26% = 9/35) than for capsulotomy (9% = 3/35). CONCLUSION: The prevalence of PCO and impact on vision and visual function in this cohort was modest 1 year after surgery. However, PCO prevalence increases with time. Follow-up of this cohort is underway to determine the effectiveness of this early intervention in identifying and treating subjects who will eventually experience clinically significant PCO.

Dedicated severe asthma services improve health-care use and quality of life

Background: Systematic assessment of severe asthma can be used to confirm the diagnosis, identify comorbidities, and address adherence to therapy. However, the prospective usefulness of this approach is yet to be established. The objective of this study was to determine whether the systematic assessment of severe asthma is associated with improved quality of life (QoL) and health-care use and, using prospective data collection, to compare relevant outcomes in patients referred with severe asthma to specialist centers across the United Kingdom. Methods: Data from the National Registry for dedicated UK Difficult Asthma Services were used to compare patient demographics, disease characteristics, and health-care use between initial assessment and a median follow-up of 286 days. Results: The study population consisted of 346 patients with severe asthma. At follow-up, there were significant reductions in health-care use in terms of primary care or ED visits (66.4% vs 87.8%, P < .0001) and hospital admissions (38% vs 48%, P = .0004). Although no difference was noted in terms of those requiring maintenance oral corticosteroids, there was a reduction in steroid dose (10 mg [8-20 mg] vs 15 mg [10-20 mg], P = .003), and fewer subjects required short-burst steroids (77.4% vs 90.8%, P = .01). Significant improvements were seen in QoL and control using the Asthma Quality of Life Questionnaire and the Asthma Control Questionnaire. Conclusions: To our knowledge, this is the first time that a prospective study has shown that a systematic assessment at a dedicated severe asthma center is associated with improved QoL and asthma control and a reduction in health-care use and oral steroid burden.

ILS and RTP: Support to Researchers Provided by Information and Learning Services as Part of the Research Training Programme at the University of Worcester, Past, Present and Future.

The purpose of this article is to investigate the involvement of Information and Learning Services staff in the delivery of the Research Training Programme at the University of Worcester, UK with a focus on researcher receptivity. I believe that by constantly reflecting on the development of that part of the programme delivered by ILS and by examining feedback from the sessions, it is possible to improve and increase the level of researcher receptivity. It is hoped that such examination and reflection will be of value and relevance to the IL community since by reflecting on success and failure in a local context and by mapping this reflection to existing research enables librarians to improve the support provided to researchers within their institutions. This article outlines the support given to research students at the University of Worcester in the past, examines the changes leading to present programme delivery and reflects on considerations for future support. The article is underpinned by reference to current research undertaken in international (albeit Western-centric) contexts. I note that the rationale behind changes is embedded in current adult learning and teaching theory. In an increasingly competitive research environment where funding is dependent on a statistically monitored research output, the aim of such support is to integrate any IL contribution into the wider research training programme. Thus resource discovery becomes part of the reflexive research cycle. Implicit in this investigative reflection is the desire of the IL community to constantly strive towards the positive reception of IL into research support programmes which are perceived by researchers as highly valuable to the process and progress of their work.

How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

Educational characteristics of adult students in portuguese technological schools

Despite a massive expansion of education in Portugal, since the 1970’s, educational attainment of the adult population in the country remains low. The numbers of working-age people in some form of continuing education are among the lowest, according to the OECD and EU-27 statistics. Technological Schools(TS), initially created in the 1990’s, under the umbrella of the Ministry of Economy in partnership with industry and industrial associations, aimed to prepare qualified staff for industries and services in the country, particularly in the engineering sector, through the provision of post secondary non-university programmes of studies, the CET (Technological Specialization Courses). Successful CET students are awarded a DET(Diploma of Technological Specialization), which corresponds to Vocational Qualification level IV of the EU, according to the latest alteration (2005) of the Education Systems Act (introduced in 1986). In this, CET’s are also clearly defined as one of the routes for access to Higher Education (HE), in Portugal. The PRILHE (Promoting Reflective and Independent Learning in Higher Education) multinational project, funded by the European Socrates Grundtvig Programme, aimed to identify the learning processes which enable adult students in higher education to become autonomous reflective learners and search best practices to support these learning processes. During this research, both quantitative and qualitative methods were used to determine how students organise their studies and develop their learning skills. The Portuguese partner in the project’ consortium used a two case studies approach, one with students of Higher Education Institutions and other with students of TS. This paper only applies to students of TS, as these have a predominant bias towards engineering. Results show that student motivation and professional teaching support contribute equally to the development of an autonomous and reflective approach to learning in adult students; this is essential for success in a knowledge economy, where lifelong learning is the key to continuous employment.

ANN based day-ahead spinning reserve forecast for electricity market simulation

Electricity market players operating in a liberalized environment require adequate decision support tools, allowing them to consider all the business opportunities and take strategic decisions. Ancillary services represent a good negotiation opportunity that must be considered by market players. This paper deals with short-term predication of day-ahead spinning reserve (SR) requirement that helps the ISO to make effective and timely decisions. Based on these forecasted information, market participants can use strategic bidding for day-ahead SR market. The proposed concepts and methodologies are implemented in MASCEM, a multi-agent based electricity market simulator. A case study based on California ISO (CAISO) data is included; the forecasted results are presented and compared with CAISO published forecast.

Mixed integer non linear programming and artificial neural network based approach to ancillary services dispatch in competitive electricity markets

Ancillary services represent a good business opportunity that must be considered by market players. This paper presents a new methodology for ancillary services market dispatch. The method considers the bids submitted to the market and includes a market clearing mechanism based on deterministic optimization. An Artificial Neural Network is used for day-ahead prediction of Regulation Down, regulation-up, Spin Reserve and Non-Spin Reserve requirements. Two test cases based on California Independent System Operator data concerning dispatch of Regulation Down, Regulation Up, Spin Reserve and Non-Spin Reserve services are included in this paper to illustrate the application of the proposed method: (1) dispatch considering simple bids; (2) dispatch considering complex bids.

Five-day plan for smoking cessation using group behaviour therapy.

The "Five-Day Plan to Stop Smoking" (FDP) is an educational group technique for smoking cessation. We studied a cohort of 123 smokers (55 men, 68 women, mean age 42 years) who participated in 11 successive FDP sessions held in Switzerland between 1995 and 1998 and who were followed up for at least 12 months by telephone or direct interview. Overall, 102 of the 123 subjects (83%) had stopped smoking by the end of the FDP, and self-declared smoking cessation rate was 25% after one year. The following factors potentially associated with outcome were studied: age, sex, smoking habit duration, cigarettes per day, Fagerström Test for Nicotine Dependence (FTND), group size, and medical presence among the group leaders. Smoking habit duration was the only variable which showed a statistically significant association with success: the rate of smoking cessation was higher among patients who had smoked for less than 20 years (34.7% vs. 18.9%, p = 0.049). Stress was the most common cause of relapse. The FDP appears to be an effective smoking cessation therapy. Propositions are made in order to improve the success rate of future sessions.

Promoting hospital-based smoking cessation services at major Swiss hospitals: a before and after study.

Whether a 1-year nationwide, government supported programme is effective in significantly increasing the number of smoking cessation clinics at major Swiss hospitals as well as providing basic training for the staff running them. We conducted a baseline evaluation of hospital services for smoking cessation, hypertension, and obesity by web search and telephone contact followed by personal visits between October 2005 and January 2006 of 44 major public hospitals in the 26 cantons of Switzerland; we compared the number of active smoking cessation services and trained personnel between baseline to 1 year after starting the programme including a training workshop for doctors and nurses from all hospitals as well as two further follow-up visits. At base line 9 (21%) hospitals had active smoking cessation services, whereas 43 (98%) and 42 (96%) offered medical services for hypertension and obesity respectively. Hospital directors and heads of Internal Medicine of 43 hospitals were interested in offering some form of help to smokers provided they received outside support, primarily funding to get started or to continue. At two identical workshops, 100 health professionals (27 in Lausanne, 73 in Zurich) were trained for one day. After the programme, 22 (50%) hospitals had an active smoking cessation service staffed with at least 1 trained doctor and 1 nurse. A one-year, government-supported national intervention resulted in a substantial increase in the number of hospitals allocating trained staff and offering smoking cessation services to smokers. Compared to the offer for hypertension and obesity this offer is still insufficient.

Self-reported health needs and use of primary health care services by adolescents enrolled in post-mandatory schools or vocational training programmes in Switzerland.

BACKGROUND: The second Swiss Multicenter Adolescent Survey on Health (SMASH02) was conducted among a representative sample (n = 7428) of students and apprentices aged 16 to 20 from the three language areas of Switzerland during the year 2002. This paper reports on health needs expressed by adolescents and their use of health care services over the 12 months preceding the survey. METHODS: Nineteen cantons representing 80% of the resident population agreed to participate. A complex iterative random cluster sample of 600 classes was drawn with classes as primary sampling unit. The participation rate was 97.7% for the classes and 99.8% for the youths in attendance. The self-administered questionnaire included 565 items. The median rate of item non-response was 1.8%. Ethical and legal requirements applying to surveys of adolescent populations were respected. RESULTS: Overall more than 90% of adolescents felt in good to excellent health. Suffering often or very often from different physical complaints or pain was also reported such as headache (boys: 15.9%, girls: 37.4%), stomach-ache (boys: 9.7%, girls: 30.0%), joint pain (boys: 24.7%, girls: 29.5%) or back pain (boys: 24.3%, girls: 34.7%). Many adolescents reported a need for help on psychosocial and lifestyle issues, such as stress (boys: 28.5%, girls: 47.7%) or depression (boys: 18.9%, girls: 34.4%). Although about 75% of adolescents reported having consulted a general practitioner and about one-third having seen another specialist, reported reasons for visits do not correspond to the expressed needs. Less than 10% of adolescents had visited a psychiatrist, a family planning centre or a social worker. CONCLUSIONS: The reported rates of health services utilisation by adolescents does not match the substantial reported needs for help in various areas. This may indicate that the corresponding problems are not adequately detected and/or addressed by professionals from the health and social sectors.