Development and validation of the suicidal behaviours questionnaire - autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults

BackgroundAutistic people and those with high autistic traits are at high risk of experiencing suicidality. Yet, there are no suicidality assessment tools developed or validated for these groups.MethodsA widely used and validated suicidality assessment tool developed for the general population (SBQ-R), was adapted using feedback from autistic adults, to create the Suicidal Behaviours Questionnaire—Autism Spectrum Conditions (SBQ-ASC). The adapted tool was refined through nine interviews, and an online survey with 251 autistic adults, to establish clarity and relevance of the items. Subsequently, 308 autistic, 113 possibly autistic, and 268 non-autistic adults completed the adapted tool online, alongside self-report measures of autistic traits (AQ), camouflaging autistic traits (CAT-Q), depression (PHQ-9), anxiety (ASA-A), thwarted belongingness and perceived burdensomeness (INQ-15), lifetime non-suicidal self-injury, and the original version of the suicidality assessment tool (SBQ-R). Analyses explored the appropriateness and measurement properties of the adapted tool between the groups.ResultsThere was evidence in support of content validity, structural validity, internal consistency, convergent and divergent validity, test–retest validity, sensitivity and specificity (for distinguishing those with or without lifetime experience of suicide attempt), and hypothesis testing of the adapted tool (SBQ-ASC) in each group. The structure of the SBQ-ASC was equivalent between autistic and possibly autistic adults, regardless of gender, or use of visual aids to help quantify abstract rating scales.LimitationsThe samples involved in the development and validation of the adapted tool were largely female, and largely diagnosed as autistic in adulthood, which limits the generalisability of results to the wider autistic population. The SBQ-ASC has been developed for use in research and is not recommended to assess risk of future suicide attempts and/or self-harm. The SBQ-ASC has been designed with and for autistic and possibly autistic adults, and is not appropriate to compare to non-autistic adults given measurement differences between these groups.ConclusionsThe SBQ-ASC is a brief self-report suicidality assessment tool, developed and validated with and for autistic adults, without co-occurring intellectual disability. The SBQ-ASC is appropriate for use in research to identify suicidal thoughts and behaviours in autistic and possibly autistic people, and model associations with risk and protective factors

Measurement Properties of the Suicidal Behaviour Questionnaire-Revised in Autistic Adults

Abstract: We explored the appropriateness and measurement properties of a suicidality assessment tool (SBQ-R) developed for the general population, in autistic adults—a high risk group for suicide. 188 autistic adults and 183 general population adults completed the tool online, and a sub-sample (n = 15) were interviewed while completing the tool. Multi-group factorial invariance analysis of the online survey data found evidence for metric non-invariance of the SBQ-R, particularly for items three (communication of suicidal intent) and four (likelihood of suicide attempt in the future). Cognitive interviews revealed that autistic adults did not interpret these items as intended by the tool designers. Results suggest autistic adults interpret key questions regarding suicide risk differently to the general population. Future research must adapt tools to better capture suicidality in autistic adults

Autism and autistic traits in those who died by suicide in England

Background: Autism and autistic traits are risk factors for suicidal behaviour. Aims: To explore the prevalence of autism (diagnosed and undiagnosed) in those who died by suicide, and identify risk factors for suicide in this group. Method: Stage 1: 372 coroners’ inquest records, covering the period 1 January 2014 to 31 December 2017 from two regions of England, were analysed for evidence that the person who died had diagnosed autism or undiagnosed possible autism (elevated autistic traits), and identified risk markers. Stage 2: 29 follow-up interviews with the next of kin of those who died gathered further evidence of autism and autistic traits using validated autism screening and diagnostic tools. Results: Stage 1: evidence of autism (10.8%) was significantly higher in those who died by suicide than the 1.1% prevalence expected in the UK general alive population (odds ratio (OR) = 11.08, 95% CI 3.92–31.31). Stage 2: 5 (17.2%) of the follow-up sample had evidence of autism identified from the coroners’ records in stage 1. We identified evidence of undiagnosed possible autism in an additional 7 (24.1%) individuals, giving a total of 12 (41.4%); significantly higher than expected in the general alive population (1.1%) (OR = 19.76, 95% CI 2.36–165.84). Characteristics of those who died were largely similar regardless of evidence of autism, with groups experiencing a comparably high number of multiple risk markers before they died. Conclusions: Elevated autistic traits are significantly over-represented in those who die by suicide

Nonlinear landscape and cultural response to sea-level rise

Dataset S1 (separate file). Relative sea-level database for Scilly comprising directly dated radiocarbon and optically stimulated luminescence samples with corresponding metainformation (lithostratigraphy, elevation, depositional environment and indicative meaning interpretations, paleotidal range change and sea-level calculations) following the ‘HOLSEA’ (‘Geographic Variability of Holocene Relative Sea Level’) protocol (Khan et al., 2019*). Dataset S2 (separate file). Table containing pollen results as relative abundance (genus level), modelled ages and age uncertainty for pollen samples, landcover index results (community cluster numbers and nMDS ordination axes 1 and 2), foraminifera results as species counts and transfer function results as paleomarsh elevations with uncertainty (1σ). Foraminifera samples with low test concentrations have indicative ranges (from mean high water neap tides to highest astronomical tides) in place of paleomarsh elevation estimations. Foraminifera abbreviations: H.wil – Haplophragmoides wilbertii ; J.mac – Jadammina macrescens ; M.fus – Miliammina fusca ; P.ipo – Polysaccammina ipohalina ; T.inf – Trochammina infalta ; T.och – Trochammina ochracea ; A.bat - Ammonia batavus ; A.mam – Asterigerinata mamilla ; B.var – Bolivina variablis; E.cri – Elphidium crispum ; E.wil – Elphidium Williamsoni ; F.spp. – Fissurina spp. ; Elphidium spp. ; H.ger – Haynesina germanica ; L.lob – Lobatula lobatula ; O.spp. – Oolha spp. ; Q.sem – Quinqueloculina seminula; R.spp. – Rosalina spp.. Dataset S3 (separate file). Database containing three worksheets for developing archaeological indices for Scilly. ‘SWBritain’ – Radiocarbon dates from Devon and Cornwall used to develop a summed probability distribution curve as an estimate of population demographic variation in Southwest Britain. ‘NWFrance’ - Radiocarbon dates from Brittany and Normandy used to develop a summed probability distribution curve as an estimate of population demography in Northwest France. ‘Scilly’ – Archaeological monuments from Scilly used to develop a probabilistic index of population variability.The article associated with these datasets is located in ORE at: http://hdl.handle.net/10871/123489Rising sea levels have been associated with human migration and behavioral shifts throughout prehistory, often with an emphasis on landscape submergence and consequent societal collapse. However, the assumption that future sea-level rise will drive similar adaptive responses is overly simplistic. Whilst the change from land to sea represents a dramatic and permanent shift for pre-existing human populations, the process of change is driven by a complex set of physical and cultural processes with long transitional phases of landscape and socio-economic change. Here we use reconstructions of prehistoric sea-level rise, paleogeographies, terrestrial landscape change and human population dynamics to show how the gradual inundation of an island archipelago resulted in decidedly non-linear landscape and cultural responses to rising sea-levels. Interpretation of past and future responses to sea-level change requires a better understanding of local physical and societal contexts to assess plausible human response patterns in the future.Historic EnglandWelsh GovernmentHigher Education Funding Council for Wale

Barriers to effective diabetes management – a survey of people with severe mental illness

Background: People with severe mental illnesses (SMI) such as schizophrenia and bipolar disorder have an increased risk of developing type 2 diabetes and have poorer health outcomes than those with diabetes alone. To maintain good diabetes control, people with diabetes are advised to engage in several self-management behaviours. The aim of this study was to identify barriers or enablers of diabetes self-management experienced by people with SMI. Methods: Adults with type 2 diabetes and SMI were recruited through UK National Health Service organisations and mental health and diabetes charities. Participants completed an anonymous survey consisting of: Summary of Diabetes Self-Care Activities (SDSCA); CORE-10 measure of psychological distress; a measure of barriers and enablers of diabetes self-management based on the Theoretical Domains Framework; Diabetes UK care survey on receipt of 14 essential aspects of diabetes healthcare. To identify the strongest explanatory variables of SDSCA outcomes, significant variables (p < .05) identified from univariate analyses were entered into multiple regressions. Results: Most of the seventy-seven participants had bipolar disorder (42%) or schizophrenia (36%). They received a mean of 7.6 (SD 3.0) diabetes healthcare essentials. Only 28.6% had developed a diabetes care plan with their health professional and only 40% reported receiving specialist psychological support. Engagement in self-management activities was variable. Participants reported taking medication on 6.1 (SD 2.0) days in the previous week but other behaviours were less frequent: general diet 4.1 (2.3) days; specific diet 3.6 (1.8) days, taking exercise 2.4 (2.1) days and checking feet on 1.7 (1.8) days. Smoking prevalence was 44%. Participants reported finding regular exercise and following a healthy diet particularly difficult. Factors associated with diabetes self22 management included: the level of diabetes healthcare and support received; emotional wellbeing; priority given to diabetes; perceived ability to manage diabetes or establish a routine to do so; and perceived consequences of diabetes self-management. Conclusions: Several aspects of diabetes healthcare and self-management are suboptimal in people with SMI. There is a need to improve diabetes self-management support for this population by integrating diabetes action plans into care planning and providing adequate psychological support to help people with SMI manage their diabetes

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

Cost-Effectiveness Modeling of Surgery Plus Adjuvant Endocrine Therapy Versus Primary Endocrine Therapy Alone in UK Women Aged 70 and Over With Early Breast Cancer

Objectives: Approximately 20% of UK women aged 70+ with early breast cancer receive primary endocrine therapy (PET) instead of surgery. PET reduces surgical morbidity but with some survival decrement. To complement and utilize a treatment dependent prognostic model, we investigated the cost-effectiveness of surgery plus adjuvant therapies versus PET for women with varying health and fitness, identifying subgroups for which each treatment is cost-effective. Methods: Survival outcomes from a statistical model, and published data on recurrence, were combined with data from a large, multicenter, prospective cohort study of over 3400 UK women aged 70+ with early breast cancer and median 52-month follow-up, to populate a probabilistic economic model. This model evaluated the cost-effectiveness of surgery plus adjuvant therapies relative to PET for 24 illustrative subgroups: Age {70, 80, 90} × Nodal status {FALSE (F), TRUE (T)} × Comorbidity score {0, 1, 2, 3+}. Results: For a 70-year-old with no lymph node involvement and no comorbidities (70, F, 0), surgery plus adjuvant therapies was cheaper and more effective than PET. For other subgroups, surgery plus adjuvant therapies was more effective but more expensive. Surgery plus adjuvant therapies was not cost-effective for 4 of the 24 subgroups: (90, F, 2), (90, F, 3), (90, T, 2), (90, T, 3). Conclusion: From a UK perspective, surgery plus adjuvant therapies is clinically effective and cost-effective for most women aged 70+ with early breast cancer. Cost-effectiveness reduces with age and comorbidities, and for women over 90 with multiple comorbidities, there is little cost benefit and a negative impact on quality of life

Process evaluation of the Bridging the Age Gap in Breast Cancer decision support intervention cluster randomised trial

Background The Bridging the Age Gap in Breast Cancer research programme sought to improve treatment decision-making for older women with breast cancer by developing and testing, in a cluster randomised trial (n = 1339 patients), two decision support interventions (DESIs). Both DESIs were used in the intervention arm and each comprised an online risk prediction model, brief decision aid and information booklet. One DESI supported the decision to have either primary endocrine therapy (PET) or surgery with adjuvant therapies and the second supported the decision to have adjuvant chemotherapy after surgery or not. Methods Sixteen sites were randomly selected to take part in the process evaluation. Multiple methods of data collection were used. Medical Research Council (MRC) guidelines for the evaluation of complex interventions were used. Results Eighty-two patients, mean age 75.5 (range 70–93), provided data for the process evaluation. Seventy-three interviews were completed with patients. Ten clinicians from six intervention sites took part in telephone interviews. Dose: Ninety-one members of staff in the intervention arm received intervention training. Reach: The online tool was accessed on 324 occasions by 27 clinicians. Reasons for non-use of the online tool were commonly that the patient had already made a decision or that there was no online access in the clinic. Of the 32 women for whom there were data available, fifteen from the intervention arm and six from the usual care arm were offered a choice of treatment. Fidelity: Clinicians used the online tool in different ways, with some using it during the consultation and others checking the online survival estimates before the consultation. Adaptation: There was evidence of adaptation when using the DESIs. A lack of infrastructure, e.g. internet access, was a barrier to the use of the online tool. The brief decision aid was rarely used. Mediators: Shared decision-making: Most patients felt able to contribute to decision-making and expressed high levels of satisfaction with the process. Participants’ responses to intervention: Six patients reported the DESIs to be very useful, one somewhat useful and two moderately useful. Conclusions Clinicians who participated were mainly supportive of the interventions and had attempted some adaptations to make the interventions applicable, but there were practical and engagement barriers that led to sub-optimal adoption in routine practice

Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research

A33-Effects of Out-of-Pocket (OOP) Payments and Financial Distress on Quality of Life (QoL) of People with Parkinson’s (PwP) and their Carer