bluuebunny/crossref_metadata_2025_split huggingface dataset:
Impact of Mobility Device Use on Quality of Life in Children With Friedreich Ataxia
Authors: Ejaz Resham , Chen Shiyi , Isaacs Charles J. , Carnevale Amanda , Wilson Judith , George Kristen , Delatycki Martin B. , Perlman Susan L. , Mathews Katherine D. , Wilmot George R. , Hoyle J. Chad , Subramony Sub H. , Zesiewicz Theresa , Farmer Jennifer M. , Lynch David R. , Yoon Grace 
Published: April 2018

Objective: To determine how mobility device use impacts quality of life in children with Friedreich ataxia. Study Design: Data from 111 pediatric patients with genetically confirmed Friedreich ataxia were collected from a prospective natural history study utilizing standardized clinical evaluations, including health-related quality of life using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Module. Results: Mobility device use was associated with worse mean PedsQL total, physical, emotional, social, and academic subscores, after adjusting for gender, age of disease onset, and Friedreich Ataxia Rating Scale score. The magnitude of the difference was greatest for the physical subscore (–19.5 points, 95% CI = –30.00, –8.99, P < .001) and least for the emotional subscore (–10.61 points, 95% CI = –20.21, –1.02, P = .03). Transition to or between mobility devices trended toward worse physical subscore (–16.20 points, 95% CI = –32.07, –0.33, P = .05). Conclusions: Mobility device use is associated with significant worsening of all domains of quality of life in children with Friedreich ataxia.
Comparison of Ketamine- Versus Nonketamine-Based Sedation on Delirium and Coma in the Intensive Care Unit
Authors: Shurtleff Vanessa , Radosevich John J. , Patanwala Asad E. 
Published: April 2018

Background: At this time, there are no studies evaluating the risk of delirium or coma with the use of ketamine in mechanically ventilated adult patients, compared to conventional therapies such as propofol or dexmedetomidine. Objective: The objective of this study was to evaluate the number of days alive without delirium or coma in mechanically ventilated patients in the intensive care unit receiving analgosedation infusions with ketamine versus without ketamine. Methods: This was a retrospective cohort study conducted at an academic medical center in the United States. Consecutive mechanically ventilated adult patients between November 2015 and April 2017 were evaluated. Patients were divided into 2 groups based on the sedative regimen used: ketamine based or nonketamine based. The primary outcome was the number of days alive without delirium or coma. The secondary outcomes were incidence of delirium, incidence of coma, and ventilator-free days at day 28. Results: The study cohort consisted of 79 patients, of which 39 received ketamine- and 40 received nonketamine-based sedation. The number of days alive without delirium or coma was 6 days (interquartile range [IQR]: 2-9 days) with ketamine and 4 days (IQR: 3-7 days) with nonketamine ( P = .351). Delirium occurred in 29 (74%) of 39 patients with ketamine and 34 (85%) of 40 patients with nonketamine ( P = .274). Coma occurred in 16 (41%) of 39 patients with ketamine and 6 (15%) of 40 patients with nonketamine ( P = .013). The median ventilator-free days were 13 days (IQR: 0-23 days) with ketamine and 21 days (0-25 days) with nonketamine ( P = .229). Conclusions: Sustained ketamine-based sedation in mechanically ventilated patients may be associated with a higher rate of observed coma but similar delirium- and coma-free days compared nonketamine-based regimens.
Between Professional Norms and Professionalism: Risk Assessment and Decision-Making of Arab Social Workers Regarding Children at Risk
Authors: Nouman Hani , Enosh Guy , Jarjoura Amal 
Published: April 2018

Purpose: Four factors might bias child risk assessment and recommendation of treatment for children at high risk among Arab social workers in Israel: collaboration of parents and social workers; improvement in child conditions; and child’s gender; as well as the social worker’s personal, cultural, and professional characteristics. Methods: An experimental survey design, using case descriptions manipulating cooperation, improvement and child’s gender, in addition to a questionnaire regarding the social workers’ personal and professional characteristics. The case descriptions were drawn from actual welfare files and adapted. Data were collected from 130 Arab social workers. Results: Risk assessment and recommendation were not influenced by child’s gender and social workers’ personal, cultural, or professional characteristics. Cooperative families and child’s improvement increased chances for recommending continuation in current treatment. Cooperation influenced only choice of community treatments and not out-of-home placements. Improvement influenced all options. Conclusions: Personal, cultural, and professional-training differences did not affect workers’ recommendations. The role of professional socialization, professional norms, and professionalism seems to outweigh all other factors.
Older, Seriously Ill Veterans’ Views on the Role of Religion and Spirituality in Health-Care Delivery
Authors: Boucher Nathan A. , Steinhauser Karen E. , Johnson Kimberly S. 
Published: April 2018

Objectives: To describe older Veteran’s perspectives on the current delivery of religious or spiritual (R/S) care. Methods: Semi-structured interviews with older veterans with advanced stage cancer, heart failure, or pulmonary disease to elicit views on when, how, and by whom religious and spiritual care is preferred. Results: The sample (n = 17) was largely male (94%), non-Hispanic white (52.9%), Christian (82.3%), and most had at least some college education (64.7%). Participants shared diagnoses of cancer (47%), heart failure (35.2%), or chronic obstructive pulmonary disease (17.6%). As a group, participants had moderate religiosity. Themes relevant to the study goal of improving VA care delivery are as follows: (1) process of R/S engagement, (2) timing of R/S engagement, and (3) awareness of services. Veterans discussed the need for VA providers to accommodate diverse spiritual beliefs, importance of screening for spiritual needs, inclusion of family spiritual support, need for higher visibility of services, use of nonchaplains for R/S support, and times when R/S is important. Discussion: Veterans recognize the diversity of their fellow veterans and note the opportunities and challenges in providing R/S support in the VA care setting. The findings have implications for quality improvement in VA care including efforts focused on enhanced outreach to veterans, bolstered education for staff, and more nuanced approaches to R/S support.
Extracorporeal Shock Wave Therapy in Acute Injury Care: A Systematic Review
Authors: Zissler Angela , Stoiber Walter , Pittner Stefan , Sänger Alexandra M 
Published: April 2018

Objectives: We provide a systematic review of the literature to identify clinical studies assessing the effects of extracorporeal shock wave therapy (ESWT) on acutely injured tissues of human subjects, also highlighting the biological mechanisms by which the technique is proposed to promote the processes of early tissue repair. Special attention is also paid to the progress of research in animal models. Method: A systematic review of the literature on ESWT of acute injuries of bone and soft tissue as available in the PubMed/MEDLINE, Cochrane CENTRAL, SPORTDiscus, and CINAHL databases up to December 2017 was conducted. Results: A total of 10 studies were included. There is some evidence for the application of ESWT in an early postacute injury phase. Most studies report benefits with no or minimal side effects. However, different types of treated tissues and wounds (varying cause and severity) and resulting heterogeneity in study design and outcome measurement make it difficult to compare studies. The picture of knowledge remains limited by an apparent lack of data on optimal treatment timing and on tissue- and injury-specific parameters. Conclusions: Although the amount of studies to date is still limited, recent clinical research has presented first successful steps to introduce ESWT as a means of treatment in acute injury care. Therefore, on the basis of the analyzed data, further testing is encouraged to validate optimal timing, physical settings, and possible long-term effects to exclude potential risks.
Facilitating integration of regulated pharmacy technicians into community pharmacy practice in Ontario: Results of an exploratory study
Authors: Salameh Luna , Yeung Daniel , Surkic Natali , Gregory Paul , Austin Zubin 
Published: April 2018

Background: The integration of regulated pharmacy technicians (RPTs) into community pharmacy practice was intended to relieve pharmacists of certain technical duties to facilitate greater provision of direct patient care services, commensurate with expanded scope of practice. There is scant data available regarding the success, value and impact of RPT integration, either in Canada or in other jurisdictions. Methods: Pharmacists and RPTs working in community practices were interviewed. Qualitative data were categorized using an iterative coding process to identify themes related to barriers and facilitators to integrating and optimizing the role of the RPT in community practice in Ontario. Results: A total of 16 RPTs and 12 pharmacists were interviewed from community sites in Ontario. Strategies for facilitating successful integration of RPTs into daily workflow were identified, based on 4 major themes: environmental factors, interpersonal factors, professional identity formation and innovative use of delegation. Interpretation: Integration of RPTs into community practice is complex and requires careful management, planning, training and follow-up to ensure attainment of objectives. Simply hiring RPTs and placing them into existing workflow patterns is generally not a successful implementation strategy. Conclusions: Implementation strategies identified through this study can provide employers, managers, pharmacists and RPTs with opportunities to enhance RPT integration and optimize the role of both pharmacists and RPTs in community practice.
Posttransplant Lymphoproliferative Disorder in Adults Receiving Kidney Transplantation in British Columbia: A Retrospective Cohort Analysis
Authors: Ready Erin , Chernushkin Kseniya , Partovi Nilufar , Hussaini Trana , Luo Cindy , Johnston Olwyn , Shapiro R. Jean 
Published: April 2018

Background: Posttransplant lymphoproliferative disorder (PTLD) is a major complication following kidney transplantation. Objective: We undertook this study to characterize PTLD in kidney transplant patients in British Columbia with regard to incidence, patient and graft survival, histological subtypes, treatment modalities, and management of immunosuppression. Design: Retrospective cohort analysis. Setting: British Columbia. Patients: All adult patients who underwent kidney transplantation in British Columbia between January 1, 1996, and December 31, 2012, were included. Patients less than 18 years of age at the time of first transplant and multiple organ transplant recipients were excluded from analysis. Measurements: Patients with lymphoproliferative disorders that occurred subsequent to kidney transplantation were considered to have developed PTLD. Methods: Cases of PTLD were identified by cross-referencing data abstracted from the provincial transplant agency’s clinical database with the provincial cancer agency’s lymphoma registry. Patients were followed up for the development of PTLD until December 31, 2012, and for outcomes of death and graft failure until December 31, 2014. Data collection was completed via an electronic chart review. Results: Of 2217 kidney transplant recipients, 37 (1.7%) developed PTLD. Nine cases were early-onset PTLD, occurring within 1 year of transplant; of these cases, 6 were known/presumed Epstein-Barr virus mismatch, compared with only 2 of 28 late-onset cases. Patient survival for early-onset PTLD was 100% at 2 years post diagnosis. Late-onset PTLD had survival rates of 71.4% and 67.9% at 1 and 2 years, respectively. PTLD was associated with significantly decreased patient survival ( P = .031) and graft survival (uncensored for death, P = .017), with median graft survival of PTLD and non-PTLD patients being 9.5 and 16 years, respectively. Immunosuppressant therapy was reduced in the majority of patients; additional therapies included rituximab monotherapy, CHOP-R, radiation, and surgery. Limitations: Limitations to this study include its retrospective nature and the unknown adherence of patients to prescribed immunosuppressant regimens. In addition, cumulative doses of immunosuppression received and the degree of immunosuppression reduction for PTLD management were not effectively captured. Conclusions: The incidence of PTLD in British Columbia following kidney transplantation was low and consistent with rates reported in the literature. The incidence of late-onset PTLD and its association with reduced patient and graft survival warrant further analysis of patients’ long-term immunosuppression.
The use of a wearable camera to explore daily functioning of older adults living with persistent pain: Methodological reflections and recommendations
Authors: Wilson Gemma , Jones Derek , Schofield Patricia , Martin Denis J. 
Published: April 2018

Background Persistent pain is prevalent within the ageing population and impacts daily functioning. Measuring daily functioning using conventional measures is problematic and novel technologies offer an alternative way of observing these behaviours. Methods This study aimed to consider the use of a wearable camera as a method of exploring a range of day-to-day patterns of functioning of older adults living with persistent pain. This study followed a mixed methods design. A purposive sample of 13 older adults (65±) with persistent pain (pain >3 months) took part in this study. Two younger adults (<65) with persistent pain and two older adults with no pain also participated. Individuals used a wearable camera (Microsoft SenseCam) for seven days Results The wearable camera recorded the frequency of body position, movement, and activities of daily living. The wearable camera also presented contextual data of location, social interactions, use of assistive devices, and behavioural adaptations and was used to inform other methods of data collection. Conclusions The wearable camera allowed insight into patterns and experiences of daily functioning that would not have otherwise been captured. However, not all aspects of functioning were recorded using the wearable camera, including the relationship between functioning and persistent pain.
Exome chip analyses identify genes affecting mortality after HLA-matched unrelated-donor blood and marrow transplantation
Authors: Zhu Qianqian , Yan Li , Liu Qian , Zhang Chi , Wei Lei , Hu Qiang , Preus Leah , Clay-Gilmour Alyssa I. , Onel Kenan , Stram Daniel O. , Pooler Loreall , Sheng Xin , Haiman Christopher A. , Zhu Xiaochun , Spellman Stephen R. , Pasquini Marcelo , McCarthy Philip L. , Liu Song , Hahn Theresa , Sucheston-Campbell Lara E. 
Published: April 2018

Key Points
We conducted the first exome-wide association study between germ line variant genotype and survival outcomes after unrelated-donor BMT. A number of novel genes were found to significantly affect survival outcomes.
L'Institut de l'environnement
Authors: Cóme Tony 
Published: April 2018

PrécisSi, aux yeux des rares Français qui la visitèrent durant les années 1960, la Hochschule für Gestaltung d'Ulm s'affirma comme un lieu d'étude exemplaire, le climat régnant au sein de cette prestigieuse école de design allemande allait irréversiblement se dégrader en 1968. La complicité qui semblait établie entre enseignants et étudiants allait être mise à mal au cours du mois de mai 1968. Des Français essayèrent néanmoins de faire infuser l'esprit de cet établissement allemand, descendant du Bauhaus, au sein des écoles d'art françaises. Lors des assemblées générales et des commissions pédagogiques de Mai 1968, ceux-ci contribuèrent à la création d'une unité d'enseignement et de recherche pluridisciplinaire animée par plusieurs membres de l'école d'Ulm et soutenue par André Malraux : l'Institut de l'environnement. Les grèves et révoltes étudiantes qui enflammèrent le Quartier latin eurent réciproquement une forte influence au sein de l'école d'Ulm, la conduisant à sa fermeture définitive. L'auteur analyse ici ces complexes effets de vases communicants.The few French visitors to the Ulm Hochschule für Gestaltung in the 1960s considered it an exemplary place to study. But the prevailing climate in this prestigious German school of design declined irreversibly in 1968. May ’68 challenged its atmosphere of productive collaboration between teachers and students. In France, however, some tried to instill the spirit of this Bauhaus‐affiliated German establishment in French art schools. On the one hand, during the general assemblies and educational commissions of May 1968, these individuals contributed to the creation of a multidisciplinary teaching and research unit led by several members of the Ulm school and supported by André Malraux: the Institut de l'Environnement. On the other hand, the student strikes and protests that raged through the Latin Quarter had a strong influence on the Hochschule für Gestaltung, leading to its final closure. The author analyzes this complex interdependence.
When Two Bosses Are Better Than One: Nearly Decomposable Systems and Organizational Adaptation
Authors: Levinthal Daniel A. , Workiewicz Maciej 
Published: April 2018

Organizations, as is true with social systems more generally, tend to be nearly, not fully, decomposable. However, analyses of nearly decomposable systems have tended to be at a single level of analysis and have generally neglected the vertical element of nearly decomposable systems. Critical to the notion of nearly decomposable systems is the property that the details of a particular subproblem may be encapsulated and captured by more aggregate parameters and that those subproblems interact in an aggregate way. We explore these issues in reference to the role of three canonical organizational structures in facilitating adaptation in the presence of near decomposability: a traditional hierarchy in which a subordinate reports to a single boss, an autonomous form in which the subordinate does not have a direct reporting relationship, and a multiauthority structure in which the subordinate reports to multiple bosses. Despite the ubiquity and potential benefits of multiauthority structures in coordinating highly interdependent tasks, our understanding of the mechanisms that determine the performance of those structures is still relatively modest. Scholars have noted conflicting empirical findings and have called for a more rigorous approach to study these organizational forms. To help address these issues, we develop an agent-based computational model that compares the performance of these three canonical types of organizational forms in settings characterized by different degrees of complexity and near decomposability.The online appendix is available at https://doi.org/10.1287/orsc.2017.1177 .
Demand Heterogeneity in Platform Markets: Implications for Complementors
Authors: Rietveld Joost , Eggers J. P. 
Published: April 2018

While two-sided platforms (e.g., video game consoles) depend on complements (e.g., games) for their success, the success of complements is also influenced by platform-level dynamics. Research suggests that greater platform adoption benefits complements by providing more potential users, but this assumes that platform adopters are homogeneous. We build on extensive research exploring the heterogeneity between early and late platform adopters to identify counterintuitive dynamics for complements. Complements launched early in a platform’s life cycle face an audience entirely of early platform adopters, whereas later-launching complements face a mixed audience of both early and late adopters, and we argue that differences in preferences and behavior between early and late adopters affect whether complements will succeed and which types will be most successful. We explore these dynamics in the context of the console video game industry using a unique data set of 2,918 video games released in the United Kingdom from 2000 to 2007. We show that despite the increase in the potential user pool as the platform evolves, video games launched later in the platform life cycle realize lower sales than those launched earlier. While increased competition explains part of this effect, we show substantial evidence consistent with our theory of preference differences between early and late adopters. This includes the finding that the negative effect is stronger for novel games and that the gap between popular and less popular complements widens as later adopters move into the platform, consistent with late adopters being risk averse and seeking to avoid purchasing mistakes. The e-companion is available at https://doi.org/10.1287/orsc.2017.1183 .
Conto “Negrinha” à luz do letramento crítico: uma experiência sobre identidade no projeto Mais Educação
Authors: Silva Jéssica Gonçalves da , Figueiredo Ana carolina Da Conceição , De Abreu Kátia Nazareth Moura 
Published: April 2018

O presente artigo é fruto de uma atividade pedagógica sobre o racismo por meio da leitura crítica e de atividades de compreensão e intervenção em um contexto escolar do projeto Mais Educação na cidade de Maricá, situada no Estado do Rio de Janeiro. Essa atividade foi elaborada em uma escola estadual em uma turma do ensino fundamental II, com o intuito de estimular a leitura crítica do texto literário Negrinha de Monteiro Lobato. A abordagem do estudo tem como fundamento teórico e metodológico as concepções de leitura e escrita no viés do letramento crítico de Freire (1989), Gee (1996), Green (1998), Kalantzis e Cope (2012) e no principio de que não há nenhum discurso neutro, ou seja, todo texto possui condicionantes sociais e a da importância de “desenvolver caminhos para ver de onde eles vêm e reconhecer como são designados por nós, leitores” (JANKS, 2016). Além disso, alinhamo-nos com o pensamento teórico de JAUSS (1994), teórico da Teoria da Estética da Recepção, ao compreendermos que a leitura resulta na fusão do horizonte de expectativa do leitor/aluno com o horizonte de expectativa do texto. O objetivo deste artigo é o de tecer reflexões sobre a importância do letramento crítico na prática escolar.
Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study
Authors: Booker Reanne , Simon Jessica , Biondo Patricia , Bouchal Shelley Raffin 
Published: April 2018

Background: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality. Aim: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation. Methods: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data. Results: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive. Conclusions: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.