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ABSTRACT IMPACT: The integration of patient-reported outcome measures into clinical care is feasible and can facilitate patient-centered care for individuals with systemic lupus erythematosus. OBJECTIVES/GOALS: Patient-reported outcome measures (PROMs) are powerful tools which can facilitate patient-centered care by highlighting individuals’ experience of illness. The aim of this study was to assess the feasibility and impact of implementing web-based PROMs in the routine clinical care of outpatients with systemic lupus erythematosus (SLE). METHODS/STUDY POPULATION: Outpatients with SLE were enrolled in this longitudinal cohort study at two academic medical centers. Participants completed PROMIS computerized adaptive tests assessing multiple quality of life domains at enrollment and prior to two consecutive routinely scheduled rheumatology visits using the ArthritisPower research registry mobile or web-based application. Score reports were shared with patients and providers before the visits. Patients and rheumatologists completed post-visit surveys evaluating the utility of PROMs in the clinical encounters. Proportions with confidence intervals were calculated to evaluate survey completion rates and responses. RESULTS/ANTICIPATED RESULTS: A total of 105 SLE patients and 16 rheumatologists participated in the study. Subjects completed PROMs in 159 of 184 eligible encounters (86%, 95% CI 81 - 91), including 90% of visit 1’s (95% CI 82 - 95) and 82% of visit 2’s (95% CI 72 - 90. Patients and rheumatologists found that PROMs were useful (91% and 83% of encounters respectively) and improved communication (86% and 72%). Rheumatologists reported that PROMs impacted patient management in 51% of visits, primarily by guiding conversations (84%), but also by influencing medication changes (15%) and prompting referrals (10%). There was no statistically significant difference in visit length before (mean=19.5 min) and after (mean=20.4 min) implementation of PROMs (p=0.52). DISCUSSION/SIGNIFICANCE OF FINDINGS: The remote capture and integration of web-based PROMs into clinical care was feasible in a diverse cohort of SLE outpatients. PROMs were useful to SLE patients and rheumatologists and promoted patient-centered care by facilitating communication.
This SHEA white paper identifies knowledge gaps and challenges in healthcare epidemiology research related to coronavirus disease 2019 (COVID-19) with a focus on core principles of healthcare epidemiology. These gaps, revealed during the worst phases of the COVID-19 pandemic, are described in 10 sections: epidemiology, outbreak investigation, surveillance, isolation precaution practices, personal protective equipment (PPE), environmental contamination and disinfection, drug and supply shortages, antimicrobial stewardship, healthcare personnel (HCP) occupational safety, and return to work policies. Each section highlights three critical healthcare epidemiology research questions with detailed description provided in supplementary materials. This research agenda calls for translational studies from laboratory-based basic science research to well-designed, large-scale studies and health outcomes research. Research gaps and challenges related to nursing homes and social disparities are included. Collaborations across various disciplines, expertise and across diverse geographic locations will be critical.
This paper presents the results of the work of the new field initiative launched by the British Museum at the Darband-i Rania pass in the Kurdistan Region of Iraq. The pass is located at the northeastern corner of Lake Dokan, where, though now subsumed into the lake, the Lower Zab flows from the Peshdar into the Rania Plain. It is a strategic location on a major route from Mesopotamia into Iran, and control of both the road and the river must always have been important. The aim of the work, which commenced in autumn of 2016, is to explore a cluster of sites that commanded the pass, with a particular focus on the first millennium b.c. Excavation is being carried out principally at two sites: Qalatga Darband, a large fortified site at the western end of the pass, and Usu Aska, a fort inside the pass itself. The occupations of these two sites are predominantly Parthian and Assyrian respectively. Smaller operations have also been carried out at Murad Rasu, a multi-period site situated on a headland across the waters on the southern shore of Lake Dokan. The results have included the discovery at Qalatga Darband of a monumental complex built of stone and roofed with terracotta roof tiles containing the smashed remains of Hellenistic statuary. Other features indicative of Hellenistic material culture are Mediterranean-type oil-presses and Corinthian column bases and capitals. At Usu Aska remains are being uncovered of an Assyrian fortification of massive proportions.
We first published on the subject of pregnancy management via fetal reduction (FR) 30 years ago . Dramatic changes have occurred in medical technology, outcomes, and patient choices – large demographic and cultural shifts that have driven the pace and direction of progress and research [2, 3].
Currently, there is limited knowledge on the impact of father-only sessions or parenting programs supporting impending fatherhood. This research explored an antenatal dads program aimed at fathers to assess the benefits of such interventions.
Literature regarding parenting programs and early childhood education initiatives, especially those aimed at children and families in disadvantaged circumstance, have been demonstrated to act as a buffer to poorer health and lifestyle outcomes in later life.
A qualitative research approach was used to explore the experiences of 16 fathers and 6 staff of a community-based parenting program with sessions focusing on fatherhood.
Four main themes were identified from the data regarding the experiences of groups engaged with the Antenatal Dads and First Year Families program. The first theme ‘Knowledge and Capacity Building’ stated that the information provided in the program helped fathers to be better informed and prepared for their impending fatherhood. The second theme was ‘Mental Health Awareness’ and identified the importance of raising awareness of depression and suicide in fathers, including where and how to get help. The third theme was ‘Soft-Entry’ and highlighted how the attendance at one service helped participants to learn about additional services through word of mouth and targeted promotion. The final theme was ‘Feeling Connected’, which helped fathers to feel more connected with the process of childbirth and development including playing and engaging with their children. Overall, the fathers found that the male-only sessions assisted them by supporting frank discussions on fatherhood. Additionally, the study helped identify the advantages of fathers meeting other fathers through attendance in the program, or even other couples in similar situations that helped fathers to feel less lonely regarding their situation.
Sarcosine, which is freely sold as a dietary supplement, has pharmacological activity to boost functioning of the glutamatergic N-methyl-d-aspartate receptor (NMDAR) and hence it is a biologically rational treatment for schizophrenia. The small number of studies carried out to date provide some evidence for its efficacy and psychiatrists could consider suggesting its use to their patients.
We present an overview of Guitarra, a simulator for the Near Infrared Camera that creates scenes from catalogues of mock or real sources using the current best estimates of the instrument characteristics and the pattern on the sky of the observations.
The mass-SFR relation of galaxies encodes information of present and historical star formation in the galaxy population. We expect the intrinsic scatter in the relation to increase to low mass where SFR becomes more stochastic. Measurements at z ‰ 4 from the Hubble Frontier fields have hinted at this (Santini et al., 2017), however, with the added uncertainty of lensing magnification we await JWST to provide robust measurements. Even with data-sets provided by JWST, uncertainties on mass and SFR estimates are often large, potentially covariant and dependent on assumptions used. I will present our method of Bayesian hierarchical modelling of the mass-SFR relation that self-consistently propagates uncertainties on mass and SFR estimates to uncertainties on the mass-SFR relation parameters. I will expose the biases imposed by standard SED-modelling practices, and address to what significance we can measure an increase in intrinsic scatter to low masses with JWST.
Schizophrenia and anorexia nervosa were recently added to the list of conditions for which whole genome sequencing might be indicated as part of the 100 000 Genomes Project, reflecting the remarkable recent progress in findings emerging from psychiatric genetics research. Genetic testing methods may offer increased opportunities for diagnosis and estimation of familial risk and could have implications for management and treatment options. They also present ethical and philosophical questions about the role of testing and storage of genetic information. Mental health professionals will need to have a good understanding of this area in order for patients to fully realise the benefits of these advances.
Declaration of Interest
K.S.B. is Editor of the British Journal of Psychiatry.
Community treatment orders (CTOs) have been in used in England and Wales since November 2008; however, their effectiveness has been debated widely, as has the question of which methodology is appropriate to investigate them. This paper uses national data to explore the use of CTOs in England.
About 5500 patients are subject to CTOs at any one time. Each year, ~4500 patients are made subject to a CTO each year and ~2500 are fully discharged, usually by the responsible clinician; fewer than half of CTO patients are recalled, and two-thirds of recalls end in revocation. The low rate of CTO discharges by mental health tribunals (below 5%) suggests that they are not used inappropriately.
The introduction of CTOs in England has coincided with a reduction in psychiatric service provision due to the economic downturn. Pressures on services might be even more severe if patients currently subject to CTOs instead needed to be detained as in-patients.
X-ray fluorescence (XRF) has been employed as one of several orthogonal means of screening materials to prevent counterfeit and adulterated products from entering the product stream. We document the use of principal component analysis (PCA) of XRF data on compositionally similar and dissimilar stainless steels for the purpose of testing the feasibility of employing XRF spectra to parse and bin these alloys as the same or significantly different alloy materials. The results indicate that XRF spectra can separate and assign alloys via PCA, but that important corrections for detector drift and scaling must be performed in order to achieve valid results.
The Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire was developed with direct patient involvement in questionnaire design, conduct and analysis using patient-centered outcomes to assess health status in patients with hemophilia (PWH). Phase 1 confirmed robustness of the methodology and feasibility. Phase 2a investigated individual test-retest reliability. Phase 2b will explore population level reproducibility.
PWH and non-PWH individuals who attended a hemophilia-related workshop were asked to complete the PROBE questionnaire 3 times (paper-based survey on 2 consecutive days and then a web-based version). Test-retest reliability was analyzed using the percentage agreement and Kappa statistic. Kappa coefficient interpretation .81-1.00 almost perfect, .61- .80 substantial; .41- .60 moderate; .21 -.40 fair; .00 -.20, slight; and < .00 poor agreement.
Sixty-three participants from twenty-one countries were enrolled with a median age of 50 (range 14–76) years. Of these, thirty (47.6 percent) were PWH or carriers, thirty-three (52.5 percent) were participants with no known bleeding disorders. On general health domain, Kappa coefficients ranged from .69 to .92, indicating substantial to almost perfect agreement, for all items. Reliability of the web-based questionnaire showed moderate to substantial agreement for all except one item. For the hemophilia-related domain, Kappa coefficients ranged from .5-1.0. Of these, five of eleven items were in perfect agreement (Kappa = 1.0). Reliability of web-based questionnaire items were in substantial to almost perfect agreement. For overall health related quality of life, the EuroQol five dimensions questionnaire (EQ-5D) had Kappa coefficients of .62 to .92. Intraclass correlation coefficient of visual analog scale (VAS) was .90 (95 percent Confidence Interval, CI; .83-.94). Test-retest reliability was comparable between hemophilia patients and participants with no known bleed.
Phase 2a demonstrated individual test-retest reliability and suggests PROBE is a reliable tool to assess Patient Reported Outcomes in PWH. The Web-based questionnaire has an acceptable agreement with the standard paper-based version in all domains. PROBE Phase 2b, to demonstrate reproducibility at the population level, is on-going. To date, 1,039 participants have been recruited from 10 countries.
Recent studies point to overlap between neuropsychiatric disorders in symptomatology and genetic aetiology.
To systematically investigate genomics overlap between childhood and adult attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and major depressive disorder (MDD).
Analysis of whole-genome blood gene expression and genetic risk scores of 318 individuals. Participants included individuals affected with adult ADHD (n = 93), childhood ADHD (n = 17), MDD (n = 63), ASD (n = 51), childhood dual diagnosis of ADHD–ASD (n = 16) and healthy controls (n = 78).
Weighted gene co-expression analysis results reveal disorder-specific signatures for childhood ADHD and MDD, and also highlight two immune-related gene co-expression modules correlating inversely with MDD and adult ADHD disease status. We find no significant relationship between polygenic risk scores and gene expression signatures.
Our results reveal disorder overlap and specificity at the genetic and gene expression level. They suggest new pathways contributing to distinct pathophysiology in psychiatric disorders and shed light on potential shared genomic risk factors.
Two recent reports convincingly demonstrate that the risk of schizophrenia is influenced by common variation of C4, which codes for complement component 4, and by rare, disruptive mutations of SETD1A, which codes for a histone methylase. These important results open the way for major advances in our understanding of the fundamental biological processes leading to disease.
Placebo responses raise significant challenges for the design of clinical trials. We report changes in agitation outcomes in the placebo arm of a recent trial of citalopram for agitation in Alzheimer's disease (CitAD).
In the CitAD study, all participants and caregivers received a psychosocial intervention and 92 were assigned to placebo for nine weeks. Outcomes included Neurobehavioral Rating Scale agitation subscale (NBRS-A), modified AD Cooperative Study-Clinical Global Impression of Change (CGIC), Cohen-Mansfield Agitation Inventory (CMAI), the Neuropsychiatric Inventory (NPI) Agitation/Aggression domain (NPI A/A) and Total (NPI-Total) and ADLs. Continuous outcomes were analyzed with mixed-effects modeling and dichotomous outcomes with logistic regression.
Agitation outcomes improved over nine weeks: NBRS-A mean (SD) decreased from 7.8 (3.0) at baseline to 5.4 (3.2), CMAI from 28.7 (6.7) to 26.7 (7.4), NPI A/A from 8.0 (2.4) to 4.9 (3.8), and NPI-Total from 37.3 (17.7) to 28.4 (22.1). The proportion of CGI-C agitation responders ranged from 21 to 29% and was significantly different from zero. MMSE improved from 14.4 (6.9) to 15.7 (7.2) and ADLs similarly improved. Most of the improvement was observed by three weeks and was sustained through nine weeks. The major predictor of improvement in each agitation measure was a higher baseline score in that measure.
We observed significant placebo response which may be due to regression to the mean, response to a psychosocial intervention, natural course of symptoms, or nonspecific benefits of participation in a trial.