Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities.

BACKGROUND: Approximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males. The NHS Long Term Plan (January 2019) recognises learning disabilities as a clinical priority area. People with a learning disability are often excluded from research by design or lack of reasonable adjustments, and self-reported health status/health-related quality of life questionnaires such as the EQ-5D are often not appropriate for this population. Here, we systematically examine the EQ-5D-3L (its wording, content, and format) using qualitative methods to inform the adaption of the measure for use with adults with mild to moderate learning disabilities. METHODS: Think-aloud interviews with carers/advocates of learning-disabled adults were undertaken to explore the difficulties with completing the EQ-5D-3L. Alternative wording, language, structure, and images were developed using focus groups, stakeholder reference groups, and an expert panel. Data analysis followed a framework method. RESULTS: The dimensions and levels within the EQ-5D-3L were deemed appropriate for adults with mild to moderate learning disabilities. Consensus on wording, structure, and images was reached through an iterative process, and an adapted version of the EQ-5D-3L was finalised. CONCLUSION: The EQ-5D-3L adapted for adults with mild to moderate intellectual/learning disabilities can facilitate measurement of self-reported health status. Research is underway to assess the potential use of the adaptation for economic evaluation.

Transforming challenges into opportunities: conducting health preference research during the COVID-19 pandemic and beyond.

The disruptions to health research during the COVID-19 pandemic are being recognized globally, and there is a growing need for understanding the pandemic's impact on the health and health preferences of patients, caregivers, and the general public. Ongoing and planned health preference research (HPR) has been affected due to problems associated with recruitment, data collection, and data interpretation. While there are no "one size fits all" solutions, this commentary summarizes the key challenges in HPR within the context of the pandemic and offers pragmatic solutions and directions for future research. We recommend recruitment of a diverse, typically under-represented population in HPR using online, quota-based crowdsourcing platforms, and community partnerships. We foresee emerging evidence on remote, and telephone-based HPR modes of administration, with further studies on the shifts in preferences related to health and healthcare services as a result of the pandemic. We believe that the recalibration of HPR, due to what one would hope is an impermanent change, will permanently change how we conduct HPR in the future.

An International Comparison of EQ-5D-5L and EQ-5D-3L for Use in Cost-Effectiveness Analysis.

OBJECTIVES: To estimate the impact of using EQ5D-5L (5L) compared with EQ5D-3L (3L) in cost-effectiveness analyses in 6 countries with 3L and 5L values: Germany, Japan, Korea, The Netherlands, China, and Spain. METHODS: Eight cost-effectiveness analyses based on clinical studies with 3L provided 11 pairwise comparisons. We estimated cost-effectiveness by applying the appropriate country values for 3L to observed responses. We re-estimated cost-effectiveness for each country by predicting the 5L tariff score for each respondent, for each country, using a previously published mapping method. We compared results in terms of impact on estimated incremental quality-adjusted life-year (QALY) gain and cost-effectiveness ratios. RESULTS: For most countries the impact of moving from 3L to 5L is to lower the incremental QALY gain in the majority of comparisons. The only exception to this was Japan, where 4 out of 11 cases (37%) saw lower QALYs gained when using 5L. The mean and median reductions in health gain, in those case studies where 5L does lead to lower health gain, are largest in The Netherlands (84% mean reduction, 41% median reduction), Germany (68% and 27%), and Spain (30% and 31%). For most countries, those studies where 5L leads to lower health gain see larger reductions than the gains in studies showing the opposite tendency. CONCLUSIONS: Overall, 3L and 5L are not interchangeable in these countries. Differences between results are large, but the direction of change can be unpredictable. These findings should prompt further investigation into the reasons for differences.

Identifying 'at-risk' critically ill patients who present to the emergency department and require intensive care unit admission: A retrospective observational cohort study.

BACKGROUND: Emergency department (ED) triage is the process of prioritising patients by medical urgency. Delays in intensive care unit (ICU) admission can adversely affect patients. OBJECTIVES: This study aimed to identify characteristics associated with ICU admission for patients triaged as Australasian Triage Scale (ATS) 3 but subsequently admitted to the ICU within 24 h of triage. METHODS: This retrospective, observational cohort study was conducted in a public teaching hospital in Queensland, Australia. Patients older than 18 y triaged with an ATS 3 and admitted to the ICU within 24 h of triage or admitted to the ward between January 1, 2012, and December 31, 2012, were included. The demographic and clinical profiles of ICU admissions vs. all other ward admissions for patients triaged an ATS of 3 were compared. Multivariable regression analysis compared characteristics of patients triaged with an ATS of 3 who did and did not require ICU transfer. Descriptive data are reported as n (%) and median and interquartile range (IQR). Regression analysis is reported as adjusted odds ratios (aORs) with 95% confidence intervals (95% CIs). RESULTS: Of the 27 454 adult ED presentations triaged with an ATS of 3, 22.4% (n = 6138) required hospital admission, comprising 5302 individuals, 2.1% of whom (n = 110) were admitted to the ICU within 24 h of triage. Age- and sex-adjusted predictors of ICU admission for patients triaged with an ATS of 3 included infectious (aOR: 3.7; 95% CI: 2.0-6.9), neurological (aOR: 2.8; 95% CI: 1.6-5.0), and gastrointestinal disorders (aOR: 2.2; 95% CI 1.2-3.5); arriving by ambulance; arriving after hours; or arriving on weekends. Regardless of diagnosis or sex, persons older than 80 y were less likely to be admitted to the ICU (aOR: 0.4; 95% CI: 0.2-0.8). CONCLUSIONS: Patients triaged as ATS 3 presenting on weekends or after hours, and those with infectious, gastrointestinal, or neurological conditions warrant careful attention as these factors were associated with higher odds of ICU admission. Ongoing staff education regarding triage and signs of deterioration are important to prevent avoidable outcomes.

Predictors of a long length of stay in the emergency department for older people.

BACKGROUND: Dedicated geriatric models of care are becoming more prevalent due to the complexity of, and increase in, acute healthcare presentations for older patients. For older people, a long stay in the emergency department (ED) may reflect the complexity of their presentation, or deficiencies in systems that manage these complexities. AIMS: To identify predictors of a long ED length of stay (LLoS) for patients ≥65 years old. METHODS: Linked hospital information systems data from a large, public Australian ED were analysed in this retrospective cohort study. LLoS was defined as the 75th percentile (617 min). Multivariate regression identified LLoS predictors for admissions and discharges separately. RESULTS: Of 16 791 ED presentations made by older people, 4192 experienced a LLoS; 55% were admitted. Increasing age was associated with an increasing ED LoS. Factors most predictive of LLoS for both admitted and discharged patients included: investigations (both pathology and imaging), less urgent Australasian triage scale categories and after-hours arrival. Ambulance arrival did not increase the risk of a LLoS for patients eventually admitted, but conferred nearly a twofold increased risk for a LLoS for discharged older persons (adjusted odds ratios = 1.9; 95% confidence interval 1.5-2.4). CONCLUSIONS: This study assists clinicians and decision-makers to identify reasons why older persons have a LLoS, whether admitted or discharged. Interventions to streamline care for older patients arriving after-hours and who require imaging and pathology are required. LoS targets should consider age distribution. The use of ED LoS as a quality of care indicator should be assessed for admissions and discharges, separately.

Cost-Effectiveness of Pain Management Strategies in Advanced Cancer.

OBJECTIVES: Uncontrolled pain in advanced cancer is a common problem and has significant impact on individuals' quality of life and use of healthcare resources. Interventions to help manage pain at the end of life are available, but there is limited economic evidence to support their wider implementation. We conducted a case study economic evaluation of two pain self-management interventions (PainCheck and Tackling Cancer Pain Toolkit [TCPT]) compared with usual care. METHODS: We generated a decision-analytic model to facilitate the evaluation. This modelled the survival of individuals at the end of life as they moved through pain severity categories. Intervention effectiveness was based on published meta-analyses results. The evaluation was conducted from the perspective of the U.K. health service provider and reported cost per quality-adjusted life-year (QALY). RESULTS: PainCheck and TCPT were cheaper (respective incremental costs -GBP148 [-EUR168.53] and -GBP474 [-EUR539.74]) and more effective (respective incremental QALYs of 0.010 and 0.013) than usual care. There was a 65 percent and 99.5 percent chance of cost-effectiveness for PainCheck and TCPT, respectively. Results were relatively robust to sensitivity analyses. The most important driver of cost-effectiveness was level of pain reduction (intervention effectiveness). Although cost savings were modest per patient, these were considerable when accounting for the number of potential intervention beneficiaries. CONCLUSIONS: Educational and monitoring/feedback interventions have the potential to be cost-effective. Economic evaluations based on estimates of effectiveness from published meta-analyses and using a decision modeling approach can support commissioning decisions and implementation of pain management strategies.

Effect of rituximab on a salivary gland ultrasound score in primary Sjögren's syndrome: results of the TRACTISS randomised double-blind multicentre substudy.

OBJECTIVES: To compare the effects of rituximab versus placebo on salivary gland ultrasound (SGUS) in primary Sjögren's syndrome (PSS) in a multicentre, multiobserver phase III trial substudy. METHODS: Subjects consenting to SGUS were randomised to rituximab or placebo given at weeks 0, 2, 24 and 26, and scanned at baseline and weeks 16 and 48. Sonographers completed a 0-11 total ultrasound score (TUS) comprising domains of echogenicity, homogeneity, glandular definition, glands involved and hypoechoic foci size. Baseline-adjusted TUS values were analysed over time, modelling change from baseline at each time point. For each TUS domain, we fitted a repeated-measures logistic regression model to model the odds of a response in the rituximab arm (≥1-point improvement) as a function of the baseline score, age category, disease duration and time point. RESULTS: 52 patients (n=26 rituximab and n=26 placebo) from nine centres completed baseline and one or more follow-up visits. Estimated between-group differences (rituximab-placebo) in baseline-adjusted TUS were -1.2 (95% CI -2.1 to -0.3; P=0.0099) and -1.2 (95% CI -2.0 to -0.5; P=0.0023) at weeks 16 and 48. Glandular definition improved in the rituximab arm with an OR of 6.8 (95% CI 1.1 to 43.0; P=0.043) at week 16 and 10.3 (95% CI 1.0 to 105.9; P=0.050) at week 48. CONCLUSIONS: We demonstrated statistically significant improvement in TUS after rituximab compared with placebo. This encourages further research into both B cell depletion therapies in PSS and SGUS as an imaging biomarker. TRIAL REGISTRATION NUMBER: 65360827, 2010-021430-64; Results.

EQ-5D-5L versus EQ-5D-3L: The Impact on Cost Effectiveness in the United Kingdom.

OBJECTIVES: To model the relationship between the three-level (3L) and the five-level (5L) EuroQol five-dimensional questionnaire and examine how differences have an impact on cost effectiveness in case studies. METHODS: We used two data sets that included the 3L and 5L versions from the same respondents. The EuroQol Group data set (n = 3551) included patients with different diseases and a healthy cohort. The National Data Bank data set included patients with rheumatoid disease (n = 5205). We estimated a system of ordinal regressions in each data set using copula models to link responses of the 3L instrument to those of the 5L instrument and its UK tariff, and vice versa. Results were applied to nine cost-effectiveness studies. RESULTS: Best-fitting models differed between the EuroQol Group and the National Data Bank data sets in terms of the explanatory variables, copulas, and coefficients. In both cases, the coefficients of the covariates and latent factors between the 3L and the 5L instruments were significantly different, indicating that moving between instruments is not simply a uniform re-alignment of the response levels for most dimensions. In the case studies, moving from the 3L to the 5L caused a decrease of up to 87% in incremental quality-adjusted life-years gained from effective technologies in almost all cases. Incremental cost-effectiveness ratios increased, often substantially. Conversely, one technology with a significant mortality gain saw increased incremental quality-adjusted life-years. CONCLUSIONS: The 5L shifts mean utility scores up the utility scale toward full health and compresses them into a smaller range, compared with the 3L. Improvements in quality of life are valued less using the 5L than using the 3L. The 3L and the 5L can produce substantially different estimates of cost effectiveness. There is no simple proportional adjustment that can be made to reconcile these differences.

Effect of tight control of inflammation in early psoriatic arthritis (TICOPA): a UK multicentre, open-label, randomised controlled trial.

BACKGROUND: Early intervention and tight control of inflammation optimise outcomes in rheumatoid arthritis but these approaches have not yet been studied in psoriatic arthritis. We aimed to assess the effect of tight control on early psoriatic arthritis using a treat-to-target approach. METHODS: For this open-label multicentre randomised controlled trial, adult patients (aged ≥18 years) with early psoriatic arthritis (<24 months symptom duration), who had not previously received treatment with any disease-modifying anti-rheumatic drugs, were enrolled from eight secondary care rheumatology centres in the UK. Enrolled patients were randomly assigned in a 1:1 ratio to receive either tight control (with review every 4 weeks and with escalation of treatment if minimal disease activity criteria not met) or standard care (standard therapy according to the treating clinician, with review every 12 weeks) for 48 weeks. Randomisation was done by minimisation incorporating a random element, to ensure treatment groups were balanced for randomising centre and pattern of arthritis (oligoarticular vs polyarticular). The randomisation procedure was done through a central 24-h automated telephone system based at the Leeds Institute of Clinical Trials Research (Leeds, UK). This was an open-label study in which patients and clinicians were aware of treatment group assignment. Clinical outcomes were recorded by a masked assessor every 12 weeks. The primary outcome was the proportion of patients achieving an American College of Rheumatology (ACR) 20% (ACR20) response at 48 weeks, analysed by intention to treat with multiple imputation for missing ACR components. Cost-effectiveness was also assessed. This trial is registered with ClinicalTrials.gov, number NCT01106079, and the ISCRCTN registry, number ISCRCTN30147736. FINDINGS: Between May 28, 2008, and March 21, 2012, 206 eligible patients were enrolled and randomly assigned to receive tight control (n=101) or standard care (n=105). In the intention-to-treat patient population, the odds of achieving an ACR20 response at 48 weeks were higher in the tight control group than in the standard care group (odds ratio 1·91, 95% CI 1·03-3·55; p=0·0392). Serious adverse events were reported by 20 (10%) patients (25 events in 14 [14%] patients in the tight control group and eight events in six [6%] patients in the standard care group) during the course of the study. No unexpected serious adverse events or deaths occurred. INTERPRETATION: Tight control of psoriatic arthritis disease activity through a treat-to-target approach significantly improves joint outcomes for newly diagnosed patients, with no unexpected serious adverse events reported. FUNDING: Arthritis Research UK and Pfizer.

Paraneoplastic dentate ganglionopathy: clinical and neuroimmunologic studies.

We describe the clinical and neuropathological features of two cases of cerebellar degeneration with selective involvement of the dentate nucleus. Both cases were associated with malignancy, however known paraneoplastic antibodies were absent. Pathological studies at autopsy confirmed T-cell-mediated neuronal destruction in the cerebellum which was strikingly limited to the dentate nucleus in both patients. The occurrence of these pathological features has not been previously described in antibodynegative paraneoplastic disease, but bears similarities to Rasmussen’s encephalitis.

Expanding emergency department capacity: a multisite study.

OBJECTIVES: The aims of the present study were to identify predictors of admission and describe outcomes for patients who arrived via ambulance to three Australian public emergency departments (EDs), before and after the opening of 41 additional ED beds within the area. METHODS: The present study was a retrospective comparative cohort study using deterministically linked health data collected between 3 September 2006 and 2 September 2008. Data included ambulance offload delay, time to see doctor, ED length of stay (LOS), admission requirement, access block, hospital LOS and in-hospital mortality. Logistic regression analysis was undertaken to identify predictors of hospital admission. RESULTS: Almost one-third of all 286037 ED presentations were via ambulance (n=79196) and 40.3% required admission. After increasing emergency capacity, the only outcome measure to improve was in-hospital mortality. Ambulance offload delay, time to see doctor, ED LOS, admission requirement, access block and hospital LOS did not improve. Strong predictors of admission before and after increased capacity included age >65 years, Australian Triage Scale (ATS) Category 1-3, diagnoses of circulatory or respiratory conditions and ED LOS >4h. With additional capacity, the odds ratios for these predictors increased for age >65 years and ED LOS >4h, and decreased for ATS category and ED diagnoses. CONCLUSIONS: Expanding ED capacity from 81 to 122 beds within a health service area impacted favourably on mortality outcomes, but not on time-related service outcomes such as ambulance offload time, time to see doctor and ED LOS. To improve all service outcomes, when altering (increasing or decreasing) ED bed numbers, the whole healthcare system needs to be considered.

Sustained reductions in emergency department laboratory test orders: impact of a simple intervention.

OBJECTIVES: To determine whether a pathology request form allowing interns and residents to order only a limited range of laboratory blood tests prior to consultation with a registrar or consultant can reduce test ordering in an emergency department (ED). METHODS: A prospective before-and-after study in an adult tertiary-referral teaching hospital ED was conducted. A pathology request form with a limited list of permissible tests was implemented for use by junior medical officers. Tests for patients 16 years and older presenting in a 20-week pre-intervention period from 19 January 2009 were compared with those in a corresponding 20-week post-intervention period from 18 January 2010. Main outcome measures were the number and cost of blood tests ordered. RESULTS: 24 652 and 25 576 presentations were analysed in the pre- and post-intervention periods, respectively. The mean number of blood tests ordered per 100 ED presentations fell by 19% from 172 in the pre- to 140 in the post-intervention period (p=0.001). The mean cost of blood tests ordered per 100 ED presentations fell by 17% from $A3177 in the pre- to $A2633 in the post-intervention period (p=0.001). There were falls in the number of coagulation profiles (11.1 vs 4.8/100 patients), C-reactive protein (5.6 vs 2.7/100 patients), erythrocyte sedimentation rate (2.5 vs 1.3/100 patients) and thyroid function tests (2.2 vs 1.6/100 patients). CONCLUSIONS: Pathology request forms limiting tests that an intern and resident may order prior to consultation with a registrar or consultant are an effective low maintenance method for reducing laboratory test ordering in the ED that is sustainable over 12 months.

The Smarter Safer Homes Solution to Support Older People Living in Their Own Homes Through Enhanced Care Models: Protocol for a Stratified Randomized Controlled Trial.

BACKGROUND: An aging population, accompanied by the prevalence of age-related diseases, presents a significant burden to health systems. This is exacerbated by an increasing shortage of aged care staff due to the existing workforce entering their retirement and fewer young people being attracted to work in aged care. In line with consumer preferences and potential cost-efficiencies, government and aged care providers are increasingly seeking options to move care and support to the community or home as opposed to residential care facilities. However, compared to residential care, home environments may provide limited opportunity for monitoring patients' progression/decline in functioning and therefore limited opportunity to provide timely intervention. To address this, the Smarter Safer Homes (SSH) platform was designed to enable self-monitoring and/or management, and to provide aged care providers with support to deliver their services. The platform uses open Internet of Things communication protocols to easily incorporate commercially available sensors into the system. OBJECTIVE: Our research aims to detail the benefits of utilizing the SSH platform as a service in its own right as well as a complementary service to more traditional/historical service offerings in aged care. This work is anticipated to validate the capacity and benefits of the SSH platform to enable older people to self-manage and aged care service providers to support their clients to live functionally and independently in their own homes for as long as possible. METHODS: This study was designed as a single-blinded, stratified, 12-month randomized controlled trial with participants recruited from three aged care providers in Queensland, Australia. The study aimed to recruit 200 people, including 145 people from metropolitan areas and 55 from regional areas. Participants were randomized to the intervention group (having the SSH platform installed in their homes to assist age care service providers in monitoring and providing timely support) and the control group (receiving their usual aged care services from providers). Data on community care, health and social-related quality of life, health service utilization, caregiver burden, and user experience of both groups were collected at the start, middle (6 months), and end of the trial (12 months). RESULTS: The trial recruited its first participant in April 2019 and data collection of the last participant was completed in November 2020. The trial eventually recruited 195 participants, with 98 participants allocated to the intervention group and 97 participants allocated to the control group. The study also received participants' health service data from government data resources in June 2021. CONCLUSIONS: A crisis is looming to support the aging population. Digital solutions such as the SSH platform have the potential to address this crisis and support aged care in the home and community. The outcomes of this study could improve and support the delivery of aged care services and provide better quality of life to older Australians in various geographical locations. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618000829213; https://tinyurl.com/2n6a75em. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31970.

Linking ambulance, emergency department and hospital admissions data: understanding the emergency journey.

OBJECTIVE: To assess the accuracy of data linkage across the spectrum of emergency care in the absence of a unique patient identifier, and to use the linked data to examine service delivery outcomes in an emergency department (ED) setting. DESIGN: Automated data linkage and manual data linkage were compared to determine their relative accuracy. Data were extracted from three separate health information systems: ambulance, ED and hospital inpatients, then linked to provide information about the emergency journey of each patient. The linking was done manually through physical review of records and automatically using a data linking tool (Health Data Integration) developed by the CSIRO (Commonwealth Scientific and Industrial Research Organisation). Match rate and quality of the linking were compared. SETTING: 10,835 patient presentations to a large, regional teaching hospital ED over a 2-month period (August - September 2007). RESULTS: Comparison of the manual and automated linkage outcomes for each pair of linked datasets demonstrated a sensitivity of between 95% and 99%; a specificity of between 75% and 99%; and a positive predictive value of between 88% and 95%. CONCLUSIONS: Our results indicate that automated linking provides a sound basis for health service analysis, even in the absence of a unique patient identifier. The use of an automated linking tool yields accurate data suitable for planning and service delivery purposes and enables the data to be linked regularly to examine service delivery outcomes.

Observing effectiveness of pathology ordering controls in emergency departments.

OBJECTIVE: To demonstrate application of data integration technology for observing the effectiveness of interventions to control pathology orders in Emergency Departments. BACKGROUND: Doctors frequently need to order blood tests in the Emergency Departments as a part of diagnostic set up in Emergency Departments. However, pathology test ordering is excessive and often unnecessary. The excessive ordering of blood test places a significant financial burden on our health care system. It also causes undue discomfort and worry to the patients. There are many interventions employed to control pathology ordering in Emergency Departments. The analysis of effectiveness of interventions is required for improving clinical practices in Emergency Departments. However, the collection and extraction of data on the effects of intervention can be very costly and time consuming. Therefore, there is a need of a technology-based solution to access, query and analyse data residing across different sources. METHODS: The research aims to determine efficacy of an intervention called the "Traffic Light System" through a pathology request form used to control the pathology ordering in one adult hospital emergency department. Health Data Integration (HDI) technology was implemented to link and query the data residing at different source systems i.e. pathology and ED information system. The data was extracted from the Emergency Department Information System at an adult tertiary hospital in Queensland. Twenty weeks of pre-intervention data was collected. Twenty weeks of post-intervention data was collected after 32-week transition interval. The data for pre-intervention, transition and post-intervention period was analysed to assess the effectiveness of the intervention in reducing commonly ordered pathology tests such as Full Blood Counts (FBC) and Erythrocyte Sedimentation Rate (ESR). RESULTS: The total number of FBC tests ordered in the pre-intervention period fell slightly in the post-intervention period (mean 42.3 vs 38.1 per 100 patients). The total number Erythrocyte Sedimentation Rate tests showed a significant declining trend as a result of ED intervention (2.5 vs 1.4 per 100 patients, p=0.001). HDI completed the task of data extraction, manipulation and querying in seconds. A manual check of a sample of 200 pathology test orders shows 95.5% sensitivity, which is considered accurate enough for this purpose. CONCLUSION: Pathology ordering can be reduced using sustainable protocols. This work has demonstrated HDI capability to extract and link pathology data efficiently to evaluate an ED intervention.

Comparing endophenotypes in adult-onset primary torsion dystonia.

Adult-onset primary torsion dystonia (AOPTD) has an autosomal dominant pattern of inheritance with markedly reduced penetrance; the genetic causes of most forms of AOPTD remain unknown. Endophenotypes, markers of sub-clinical gene carriage, may be of use detecting non-manifesting gene carriers in relatives of AOPTD patients. The aim of this study was to compare the utility of the spatial discrimination threshold (SDT) and temporal discrimination threshold (TDT) as potential endophenotypes in AOPTD. Data on other published candidate endophenotypes are also considered. Both SDT and TDT testing were performed in 24 AOPTD patients and 34 of their unaffected first degree relatives; results were compared with normal values from a control population. Of the 24 AOPTD patients 5 (21%) had abnormal SDTs and 20 (83%) had abnormal TDTs. Of the 34 first degree relatives 17 (50%) had abnormal SDTs and 14 (41%) had abnormal TDTs. Discordant results on SDT and TDT testing were found in 16 (67%) AOPTD patients and 21 (62%) first degree relatives. TDT testing has superior sensitivity compared to SDT testing in AOPTD patients; although false positive TDTs are recognised, the specificity of TDT testing in unaffected relatives is not determinable. The high level of discordance between the two tests probably relates methodological difficulties with SDT testing. The SDT is an unreliable AOPTD endophenotype; TDT testing fulfils criteria for a reliable endophenotype with a high sensitivity.

Transforming discrete choice experiment latent scale values for EQ-5D-3L using the visual analogue scale.

BACKGROUND: Discrete choice experiments (DCEs) are widely used to elicit health state preferences. However, additional information is required to transform values to a scale with dead valued at 0 and full health valued at 1. This paper presents DCE-VAS, an understandable and easy anchoring method with low participant burden based on the visual analogue scale (VAS). METHODS: Responses from 1450 members of the UK general public to a discrete choice experiment (DCE) were analysed using mixed logit models. Latent scale valuations were anchored to a full health = 1, dead = 0 scale using participants' VAS ratings of three states including the dead. The robustness of results was examined. This included a filtering procedure with the influence each individual respondent had on valuation being calculated, and those whose influence was more than two standard deviations away from the mean excluded. RESULTS: Coefficients in all models were in the expected direction and statistically significant. Excluding respondents who self-reported not understanding the VAS task did not significantly influence valuation, but excluding a small number who valued 33333 extremely low did. However, after eight respondents were removed via the filtering procedure, valuations were robust to removing other participants. CONCLUSION: DCE-VAS is a feasible way of anchoring DCE results to a 0-1 anchored scale with low additional respondent burden.

Patients with mental health conditions in the emergency department: Why so long a wait?

OBJECTIVES: Patients presenting with a mental health disorder (MHD) wait longer in the ED compared to those presenting for other reasons, potentially placing vulnerable patients at further risk for deterioration. The present study identified factors associated with a long ED stay for patients with a MHD. METHODS: Linked ambulance, emergency, pathology, imaging and admission data for an 18-month period were analysed for ED presentations diagnosed with an MHD ICD-10 at a large teaching hospital. Admissions and discharges were considered separately; a long ED stay was defined as the 90th percentile length of stay. Multivariable generalised linear models were built, identifying predictors of a long ED stay for presentations diagnosed with a MHD. RESULTS: The sample comprised 1163 admissions and 2242 discharges. For admissions, significant predictors for long ED stay were investigations (pathology or imaging tests), a triage score of 1 or 2, arrival out-of-hours (18.00-05.59 hours) and arrival by ambulance. For discharges, significant predictors of a long ED stay were investigations (pathology or imaging tests), arrival out-of-hours, arrival by ambulance and increasing age. CONCLUSIONS: Some factors predictive of a long ED stay for patients presenting to the ED and diagnosed with a MHD varied based on their disposition. For admissions, the most urgent presentations were likely to stay longest. Strategies to reduce ED stay for both admissions and discharges should consider addressing modifiable aspects, including the need for certain investigations, and non-modifiable aspects, including the need for further access to after-hours mental health services in hospital and in the community.

Co-existence of leiomyomas, adenomyosis and endometriosis in women with endometrial cancer.

Leiomyomas, adenomyosis, and endometriosis are reported to be risk factors for endometrial carcinoma (EC), and adenomyosis and endometriosis also for ovarian carcinoma (OC). We aimed to describe the prevalence of these conditions in EC patients with or without an OC diagnosis, and to investigate their relationship with EC risk and prognostic factors in these patients. We evaluated the co-existence of these three conditions in 1399 EC patients, and compared the prevalence of epidemiological risk factors and tumor prognostic features in patients with each condition versus not. Prevalence of conditions was also assessed in the subset of patients with prior/concurrent OC. The observed coexistence of leiomyomas, adenomyosis and endometriosis significantly deviated from that expected (P = 1.2 × 10-8). Patients were more likely to: report a younger age at menarche (PTrend = 0.004) if they had leiomyomas; have used oral contraceptives (P = 6.6 × 10-5) or had ≥2 full-term pregnancies (PTrend = 2.0 × 10-9) if they had adenomyosis; be diagnosed with EC at younger age (P = 5.0 × 10-11) if they had endometriosis. Patients with prior/concurrent OC were more likely to be diagnosed at younger age (P = 5.0 × 10-5), have endometriosis (P = 9.9 × 10-7), and present with higher stage EC (PTrend = 6.6 × 10-5). These findings justify further consideration of these gynecologic conditions as independent risk and prognostic factors for EC.

Generating high-quality data abstractions from scanned clinical records: text-mining-assisted extraction of endometrial carcinoma pathology features as proof of principle.

OBJECTIVE: Medical research studies often rely on the manual collection of data from scanned typewritten clinical records, which can be laborious, time consuming and error prone because of the need to review individual clinical records. We aimed to use text mining to assist with the extraction of clinical features from complex text-based scanned pathology records for medical research studies. DESIGN: Text mining performance was measured by extracting and annotating three distinct pathological features from scanned photocopies of endometrial carcinoma clinical pathology reports, and comparing results to manually abstracted terms. Inclusion and exclusion keyword trigger terms to capture leiomyomas, endometriosis and adenomyosis were provided based on expert knowledge. Terms were expanded with character variations based on common optical character recognition (OCR) error patterns as well as negation phrases found in sample reports. The approach was evaluated on an unseen test set of 1293 scanned pathology reports originating from laboratories across Australia. SETTING: Scanned typewritten pathology reports for women aged 18-79 years with newly diagnosed endometrial cancer (2005-2007) in Australia. RESULTS: High concordance with final abstracted codes was observed for identifying the presence of three pathology features (94%-98% F-measure). The approach was more consistent and reliable than manual abstractions, identifying 3%-14% additional feature instances. CONCLUSION: Keyword trigger-based automation with OCR error correction and negation handling proved not only to be rapid and convenient, but also providing consistent and reliable data abstractions from scanned clinical records. In conjunction with manual review, it can assist in the generation of high-quality data abstractions for medical research studies.