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Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.
Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.
Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.
Significance of results
This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.
Immune system markers may predict affective disorder treatment response, but whether an overall immune system marker predicts bipolar disorder treatment effect is unclear.
Bipolar CHOICE (N = 482) and LiTMUS (N = 283) were similar comparative effectiveness trials treating patients with bipolar disorder for 24 weeks with four different treatment arms (standard-dose lithium, quetiapine, moderate-dose lithium plus optimised personalised treatment (OPT) and OPT without lithium). We performed secondary mixed effects linear regression analyses adjusted for age, gender, smoking and body mass index to investigate relationships between pre-treatment white blood cell (WBC) levels and clinical global impression scale (CGI) response.
Compared to participants with WBC counts of 4.5–10 × 109/l, participants with WBC < 4.5 or WBC ≥ 10 showed similar improvement within each specific treatment arm and in gender-stratified analyses.
An overall immune system marker did not predict differential treatment response to four different treatment approaches for bipolar disorder all lasting 24 weeks.
In early October 2014, 7 months after the 2014–2015 Ebola epidemic in West Africa began, a cluster of reported deaths in Koinadugu, a remote district of Sierra Leone, was the first evidence of Ebola virus disease (Ebola) in the district. Prior to this event, geographic isolation was thought to have prevented the introduction of Ebola to this area. We describe our initial investigation of this cluster of deaths and subsequent public health actions after Ebola was confirmed, and present challenges to our investigation and methods of overcoming them. We present a transmission tree and results of whole genome sequencing of selected isolates to identify the source of infection in Koinadugu and demonstrate transmission between its villages. Koinadugu's experience highlights the danger of assuming that remote location and geographic isolation can prevent the spread of Ebola, but also demonstrates how deployment of rapid field response teams can help limit spread once Ebola is detected.
The Learning Health System Network clinical data research network includes academic medical centers, health-care systems, public health departments, and health plans, and is designed to facilitate outcomes research, pragmatic trials, comparative effectiveness research, and evaluation of population health interventions.
The Learning Health System Network is 1 of 13 clinical data research networks assembled to create, in partnership with 20 patient-powered research networks, a National Patient-Centered Clinical Research Network.
Results and Conclusions
Herein, we describe the Learning Health System Network as an emerging resource for translational research, providing details on the governance and organizational structure of the network, the key milestones of the current funding period, and challenges and opportunities for collaborative science leveraging the network.
Critical to the development of improved HIV elimination efforts is a greater understanding of how social networks and their dynamics are related to HIV risk and prevention. In this paper, we examine network stability of confidant and sexual networks among young black men who have sex with men (YBMSM). We use data from uConnect (2013–2016), a population-based, longitudinal cohort study. We use an innovative approach to measure both sexual and confidant network stability at three time points, and examine the relationship between each type of stability and HIV risk and prevention behaviors. This approach is consistent with a co-evolutionary perspective in which behavior is not only affected by static properties of an individual's network, but may also be associated with changes in the topology of his or her egocentric network. Our results indicate that although confidant and sexual network stability are moderately correlated, their dynamics are distinct with different predictors and differing associations with behavior. Both types of stability are associated with lower rates of risk behaviors, and both are reduced among those who have spent time in jail. Public health awareness and engagement with both types of networks may provide new opportunities for HIV prevention interventions.
We investigated how different models of HIV transmission, and assumptions regarding the distribution of unprotected sex and syringe-sharing events (‘risk acts’), affect quantitative understanding of HIV transmission process in people who inject drugs (PWID). The individual-based model simulated HIV transmission in a dynamic sexual and injecting network representing New York City. We constructed four HIV transmission models: model 1, constant probabilities; model 2, random number of sexual and parenteral acts; model 3, viral load individual assigned; and model 4, two groups of partnerships (low and high risk). Overall, models with less heterogeneity were more sensitive to changes in numbers risk acts, producing HIV incidence up to four times higher than that empirically observed. Although all models overestimated HIV incidence, micro-simulations with greater heterogeneity in the HIV transmission modelling process produced more robust results and better reproduced empirical epidemic dynamics.
We present the first results of a dedicated search for Diffuse Interstellar Bands that have profiles with FWHM > 6 Å. Broad DIBs have been noticed in past surveys using averages of multiple sight lines (e.g. Jenniskens & Désert, 1994), but careful detection, measurement, and cataloguing for individual sight lines has not been done since the pioneering work of Herbig (1995). We have initiated an observing campaign using the Apache Point Observatory in order to obtain low-resolution spectra to search for such broad DIBs and monitor their behaviour from star to star. A first sample of 21 stars with 0.3 < E(B-V) < 3.3 mag, along with 15 matched low-reddening stars, were observed with the APO/DIS B400 (R ~ 450) and R300 (R ~ 1000) gratings to obtain spectra having S/N > 500.
Anomalously broad diffuse interstellar bands (DIBs) at 5780.5, 5797.1, 6196.0, and 6613.6 Å are found in absorption along the line of sight to Herschel 36, an O star system next to the bright Hourglass nebula of the Hii region Messier 8. Excited lines of CH and CH+ are seen as well. We show that the region is very compact and itemize other anomalies of the gas. An infrared-bright star within 400 AU is noted. The combination of these effects produces anomalous DIBs, interpreted by Oka et al. (2013, see also this volume) as being caused predominantly by infrared pumping of rotational levels of relatively small molecules.
The cognitive profile of early onset Parkinson’s disease (EOPD) has not been clearly defined. Mutations in the parkin gene are the most common genetic risk factor for EOPD and may offer information about the neuropsychological pattern of performance in both symptomatic and asymptomatic mutation carriers. EOPD probands and their first-degree relatives who did not have Parkinson’s disease (PD) were genotyped for mutations in the parkin gene and administered a comprehensive neuropsychological battery. Performance was compared between EOPD probands with (N = 43) and without (N = 52) parkin mutations. The same neuropsychological battery was administered to 217 first-degree relatives to assess neuropsychological function in individuals who carry parkin mutations but do not have PD. No significant differences in neuropsychological test performance were found between parkin carrier and noncarrier probands. Performance also did not differ between EOPD noncarriers and carrier subgroups (i.e., heterozygotes, compound heterozygotes/homozygotes). Similarly, no differences were found among unaffected family members across genotypes. Mean neuropsychological test performance was within normal range in all probands and relatives. Carriers of parkin mutations, whether or not they have PD, do not perform differently on neuropsychological measures as compared to noncarriers. The cognitive functioning of parkin carriers over time warrants further study. (JINS, 2011, 17, 1–10)
This chapter focuses on the role that personality plays in resilience across the lifespan. The concept of personality captures a combination of genetic, familial, social, and cultural elements, and thus is very useful in understanding differential patterns of development. In particular, this chapter highlights findings from our work with the Terman Life Cycle Study, the longest longitudinal study conducted to date, to demonstrate how core aspects of the individual may impact how he or she travels life's pathways and reacts to life's challenges. Our findings suggest that temperamental predispositions, internal stress, coping responses, social relationships, and health behaviors may all be relevant to whether an individual will thrive and stay healthy in the face of challenge or succumb to illness and disease. By identifying the mechanisms involved, we can better understand risk and intervene more effectively, with the goal of increasing resilience as people age.
It is easy to observe striking individual differences in healthy aging. Consider these two cases drawn from our lifespan studies of longevity. Elmer was constantly on the go – involved in everything and friends with everyone. In the morning he raised funds for a benefit concert to support the children's hospital; in the afternoon he bowled with his buddies; in the evening he cared for his wife and enjoyed the company of his children and grandchildren.
Cu2ZnSnS4 (CZTS) is a promising alternative for Cu(In,Ga)Se2 (CIGS) absorber layers in thin film solar cells and is comprised of commodity elements which will enable scale-up of chalcopyrite panel production unhindered by elemental supplies and costs. Various CZTS synthesis methods, especially sulfurization of stacked metal or metal sulfide layers, are being studied and have led to cell efficiencies up to 6.7% . Here we report our studies of CZTS thin film synthesis via room temperature sputtering from a single CZTS target and co-sputtering from Cu2S, ZnS and SnS2 binary targets, both followed by sulfurization between 500 C - 600 C using either elemental sulfur vapor or in-situ generated H2S. Sputtering from sulfur-containing targets is designed to increase the sulfur content in the precursor films to promote stoichiometry. We report on the effects of processing including deposition on soda-lime and borosilicate glasses and deposition of Na-containing layers on film morphology (AFM/SEM), composition (EDS), phase (XRD), grain size (XRD/EBSD), grain boundary structure (EBSD), optical (spectroscopic ellipsometry) and electrical properties. Processing conditions producing desirable Zn-rich/Cu-poor films are identified . The formation of MoSe2 at Mo/CIGS interface is believed to promote Ohmic contacts, but in CZTS we associate excessive formation of frangible MoS2 with film delamination from Mo/borosilicate glass substrates. Strategies for preventing delamination including adhesion layers are investigated and discussed. P-N junctions are formed with CdS/ZnO using chemical bath deposition and sputtering, and I-V characteristics are reported. Schottky junctions are formed and C-V measurements are used to determine the doping in the CZTS absorber layers. H. Katagiri, et al., MRS Symp. Proc. 1165 1165-M04-01 (2009).