Psychometric Evaluation and Design of Patient-Centered Communication Measures for Cancer Care Settings

Objective To evaluate the psychometric properties of questions that assess patient perceptions of patient-provider communication and design measures of patient-centered communication (PCC). Methods Participants (adults with colon or rectal cancer living in North Carolina) completed a survey at 2 to 3 months post-diagnosis. The survey included 87 questions in six PCC Functions: Exchanging Information, Fostering Health Relationships, Making Decisions, Responding to Emotions, Enabling Patient Self-Management, and Managing Uncertainty. For each Function we conducted factor analyses, item response theory modeling, and tests for differential item functioning, and assessed reliability and construct validity. Results Participants included 501 respondents; 46% had a high school education or less. Reliability within each Function ranged from 0.90 to 0.96. The PCC-Ca-36 (36-question survey; reliability=0.94) and PCC-Ca-6 (6-question survey; reliability=0.92) measures differentiated between individuals with poor and good health (i.e., known-groups validity) and were highly correlated with the HINTS communication scale (i.e., convergent validity). Conclusion This study provides theory-grounded PCC measures found to be reliable and valid in colorectal cancer patients in North Carolina. Future work should evaluate measure validity over time and in other cancer populations. Practice implications The PCC-Ca-36 and PCC-Ca-6 measures may be used for surveillance, intervention research, and quality improvement initiatives

Black hole masses and enrichment of z ~ 6 SDSS quasars

We present sensitive near-infrared spectroscopic observations for a sample of five z ~ 6 quasars. These are amongst the most distant, currently known quasars in the universe. The spectra have been obtained using ISAAC at the VLT and include the CIV, MgII and FeII lines. We measure the FeII/MgII line ratio, as an observational proxy for the Fe/alpha element ratio. We derive a ratio of 2.7+/-0.8 for our sample, which is similar to that found for lower redshift quasars, i.e., we provide additional evidence for the lack of evolution in the FeII/MgII line ratio of quasars up to the highest redshifts. This result demonstrates that the sample quasars must have undergone a major episode of iron enrichment in less than one Gyr and star formation must have commenced at z > 8. The linewidths of the MgII and CIV lines give two estimates for the black hole masses. A third estimate is given by assuming that the quasars emit at their Eddington luminosity. The derived masses using these three methods agree well, implying that the quasars are not likely to be strongly lensed. We derive central black hole masses of 0.3-5.2 10^9 solar masses. We use the difference between the redshift of MgII (a proxy for the systemic redshift of the quasar) and the onset of the Gunn Peterson trough to derive the extent of the ionized Stromgren spheres around our target quasars. The derived physical radii are about five Mpc. Using a simple ionization model, the emission of the central quasars would need of order 10^6-10^8 year to create these cavities in a surrounding intergalactic medium with a neutral fraction between 0.1 and 1.0. As the e-folding time scale for the central accreting black hole is on the order of a few times 10^7 year, it can grow by one e-folding or less within this time span.Comment: Accepted by ApJ, 15 pages, 8 figure

Incidence and risk factors of posttraumatic seizures following traumatic brain injury: A Traumatic Brain Injury Model Systems Study

Objective Determine incidence of posttraumatic seizure (PTS) following traumatic brain injury (TBI) among individuals with moderate-to-severe TBI requiring rehabilitation and surviving at least 5 years. Methods Using the prospective TBI Model Systems National Database, we calculated PTS incidence during acute hospitalization, and at years 1, 2, and 5 postinjury in a continuously followed cohort enrolled from 1989 to 2000 (n = 795). Incidence rates were stratified by risk factors, and adjusted relative risk (RR) was calculated. Late PTS associations with immediate (7 day) versus no seizure prior to discharge from acute hospitalization was also examined. Results PTS incidence during acute hospitalization was highest immediately (<24 h) post-TBI (8.9%). New onset PTS incidence was greatest between discharge from inpatient rehabilitation and year 1 (9.2%). Late PTS cumulative incidence from injury to year 1 was 11.9%, and reached 20.5% by year 5. Immediate/early PTS RR (2.04) was increased for those undergoing surgical evacuation procedures. Late PTS RR was significantly greater for individuals who self-identified as a race other than black/white (year 1 RR = 2.22), and for black individuals (year 5 RR = 3.02) versus white individuals. Late PTS was greater for individuals with subarachnoid hemorrhage (year 1 RR = 2.06) and individuals age 23–32 (year 5 RR = 2.43) and 33–44 (year 5 RR = 3.02). Late PTS RR years 1 and 5 was significantly higher for those undergoing surgical evacuation procedures (RR: 3.05 and 2.72, respectively). Significance In this prospective, longitudinal, observational study, PTS incidence was similar to that in studies published previously. Individuals with immediate/late seizures during acute hospitalization have increased late PTS risk. Race, intracranial pathologies, and neurosurgical procedures also influenced PTS RR. Further studies are needed to examine the impact of seizure prophylaxis in high-risk subgroups and to delineate contributors to race/age associations on long-term seizure outcomes

Prognostic models for predicting posttraumatic seizures during acute hospitalization, and at 1 and 2 years following traumatic brain injury

Objective Posttraumatic seizures (PTS) are well-recognized acute and chronic complications of traumatic brain injury (TBI). Risk factors have been identified, but considerable variability in who develops PTS remains. Existing PTS prognostic models are not widely adopted for clinical use and do not reflect current trends in injury, diagnosis, or care. We aimed to develop and internally validate preliminary prognostic regression models to predict PTS during acute care hospitalization, and at year 1 and year 2 postinjury. Methods Prognostic models predicting PTS during acute care hospitalization and year 1 and year 2 post-injury were developed using a recent (2011–2014) cohort from the TBI Model Systems National Database. Potential PTS predictors were selected based on previous literature and biologic plausibility. Bivariable logistic regression identified variables with a p-value < 0.20 that were used to fit initial prognostic models. Multivariable logistic regression modeling with backward-stepwise elimination was used to determine reduced prognostic models and to internally validate using 1,000 bootstrap samples. Fit statistics were calculated, correcting for overfitting (optimism). Results The prognostic models identified sex, craniotomy, contusion load, and pre-injury limitation in learning/remembering/concentrating as significant PTS predictors during acute hospitalization. Significant predictors of PTS at year 1 were subdural hematoma (SDH), contusion load, craniotomy, craniectomy, seizure during acute hospitalization, duration of posttraumatic amnesia, preinjury mental health treatment/psychiatric hospitalization, and preinjury incarceration. Year 2 significant predictors were similar to those of year 1: SDH, intraparenchymal fragment, craniotomy, craniectomy, seizure during acute hospitalization, and preinjury incarceration. Corrected concordance (C) statistics were 0.599, 0.747, and 0.716 for acute hospitalization, year 1, and year 2 models, respectively. Significance The prognostic model for PTS during acute hospitalization did not discriminate well. Year 1 and year 2 models showed fair to good predictive validity for PTS. Cranial surgery, although medically necessary, requires ongoing research regarding potential benefits of increased monitoring for signs of epileptogenesis, PTS prophylaxis, and/or rehabilitation/social support. Future studies should externally validate models and determine clinical utility

Chronic Fatigue Syndrome – A clinically empirical approach to its definition and study

BACKGROUND: The lack of standardized criteria for defining chronic fatigue syndrome (CFS) has constrained research. The objective of this study was to apply the 1994 CFS criteria by standardized reproducible criteria. METHODS: This population-based case control study enrolled 227 adults identified from the population of Wichita with: (1) CFS (n = 58); (2) non-fatigued controls matched to CFS on sex, race, age and body mass index (n = 55); (3) persons with medically unexplained fatigue not CFS, which we term ISF (n = 59); (4) CFS accompanied by melancholic depression (n = 27); and (5) ISF plus melancholic depression (n = 28). Participants were admitted to a hospital for two days and underwent medical history and physical examination, the Diagnostic Interview Schedule, and laboratory testing to identify medical and psychiatric conditions exclusionary for CFS. Illness classification at the time of the clinical study utilized two algorithms: (1) the same criteria as in the surveillance study; (2) a standardized clinically empirical algorithm based on quantitative assessment of the major domains of CFS (impairment, fatigue, and accompanying symptoms). RESULTS: One hundred and sixty-four participants had no exclusionary conditions at the time of this study. Clinically empirical classification identified 43 subjects as CFS, 57 as ISF, and 64 as not ill. There was minimal association between the empirical classification and classification by the surveillance criteria. Subjects empirically classified as CFS had significantly worse impairment (evaluated by the SF-36), more severe fatigue (documented by the multidimensional fatigue inventory), more frequent and severe accompanying symptoms than those with ISF, who in turn had significantly worse scores than the not ill; this was not true for classification by the surveillance algorithm. CONCLUSION: The empirical definition includes all aspects of CFS specified in the 1994 case definition and identifies persons with CFS in a precise manner that can be readily reproduced by both investigators and clinicians

Where do stars explode in the ISM? -- The distribution of dense gas around massive stars and supernova remnants in M33

Star formation in galaxies is regulated by turbulence, outflows, gas heating and cloud dispersal -- processes which depend sensitively on the properties of the interstellar medium (ISM) into which supernovae (SNe) explode. Unfortunately, direct measurements of ISM environments around SNe remain scarce, as SNe are rare and often distant. Here we demonstrate a new approach: mapping the ISM around the massive stars that are soon to explode. This provides a much larger census of explosion sites than possible with only SNe, and allows comparison with sensitive, high-resolution maps of the atomic and molecular gas from the Jansky VLA and ALMA. In the well-resolved Local Group spiral M33, we specifically observe the environments of red supergiants (RSGs, progenitors of Type II SNe), Wolf-Rayet stars (WRs, tracing stars $>$30 M$_{\odot}$, and possibly future stripped-envelope SNe), and supernova remnants (SNRs, locations where SNe have exploded). We find that massive stars evolve not only in dense, molecular-dominated gas (with younger stars in denser gas), but also a substantial fraction ($\sim$45\% of WRs; higher for RSGs) evolve in lower-density, atomic-gas-dominated, inter-cloud media. We show that these measurements are consistent with expectations from different stellar-age tracer maps, and can be useful for validating SN feedback models in numerical simulations of galaxies. Along with the discovery of a 20-pc diameter molecular gas cavity around a WR, these findings re-emphasize the importance of pre-SN/correlated-SN feedback evacuating the dense gas around massive stars before explosion, and the need for high-resolution (down to pc-scale) surveys of the multi-phase ISM in nearby galaxies.Comment: 34 pages, 14 figures. Submitted to ApJ. Comments welcome! The density distributions will be made publicly available after journal acceptance of manuscript. Please feel free to contact us in the meantime if you would like to use the

Information Technology to Support Improved Care For Chronic Illness

BackgroundIn populations with chronic illness, outcomes improve with the use of care models that integrate clinical information, evidence-based treatments, and proactive management of care. Health information technology is believed to be critical for efficient implementation of these chronic care models. Health care organizations have implemented information technologies, such as electronic medical records, to varying degrees. However, considerable uncertainty remains regarding the relative impact of specific informatics technologies on chronic illness care.ObjectiveTo summarize knowledge and increase expert consensus regarding informatics components that support improvement in chronic illness care.DesignA systematic review of the literature was performed. "Use case" models were then developed, based on the literature review, and guidance from clinicians and national quality improvement projects. A national expert panel process was conducted to increase consensus regarding information system components that can be used to improve chronic illness care.ResultsThe expert panel agreed that informatics should be patient-centered, focused on improving outcomes, and provide support for illness self-management. They concurred that outcomes should be routinely assessed, provided to clinicians during the clinical encounter, and used for population-based care management. It was recommended that interactive, sequential, disorder-specific treatment pathways be implemented to quickly provide clinicians with patient clinical status, treatment history, and decision support.ConclusionsSpecific informatics strategies have the potential to improve care for chronic illness. Software to implement these strategies should be developed, and rigorously evaluated within the context of organizational efforts to improve care

“My Treasure Box” : Pedagogical documentation, digital portfolios and children’s agency in Finnish early years education

This chapter discusses the opportunities and challenges associated with the inclusive use of digital portfolios in pedagogical documentation in Finnish early childhood education (ECE), and examines children’s participation and agency in the process. The chapter draws upon empirical data from the research and development programme of three Finnish municipalities and their ECE centres. Altogether, the empirical data comprise the digital portfolios of 71 children from six ECE groups each comprising of children aged 3 to 5 years old. This writing demonstrates how the construction of digital portfolios in these ECE groups produced a dynamic tension between the adults’ and children’s agency; between digital archiving and narrative documentation of the children’s lived experiences; and between documentation and reflection. The results also indicate how digital portfolios created inequality among the children regarding the ways in which the children were seen and heard in their portfolios, and how they were able to participate and demonstrate agency in this process. The chapter concludes by considering the conditions of participatory work in ECE classrooms in which the child’s agency. matters.Peer reviewe

Parent-of-origin-specific allelic associations among 106 genomic loci for age at menarche.

Age at menarche is a marker of timing of puberty in females. It varies widely between individuals, is a heritable trait and is associated with risks for obesity, type 2 diabetes, cardiovascular disease, breast cancer and all-cause mortality. Studies of rare human disorders of puberty and animal models point to a complex hypothalamic-pituitary-hormonal regulation, but the mechanisms that determine pubertal timing and underlie its links to disease risk remain unclear. Here, using genome-wide and custom-genotyping arrays in up to 182,416 women of European descent from 57 studies, we found robust evidence (P < 5 × 10(-8)) for 123 signals at 106 genomic loci associated with age at menarche. Many loci were associated with other pubertal traits in both sexes, and there was substantial overlap with genes implicated in body mass index and various diseases, including rare disorders of puberty. Menarche signals were enriched in imprinted regions, with three loci (DLK1-WDR25, MKRN3-MAGEL2 and KCNK9) demonstrating parent-of-origin-specific associations concordant with known parental expression patterns. Pathway analyses implicated nuclear hormone receptors, particularly retinoic acid and γ-aminobutyric acid-B2 receptor signalling, among novel mechanisms that regulate pubertal timing in humans. Our findings suggest a genetic architecture involving at least hundreds of common variants in the coordinated timing of the pubertal transition