bluuebunny/crossref_metadata_2025_split huggingface dataset:
Communicating with children about parental cancer: The devil in the details.
Authors: Moore Cynthia , Shea Sarah , Russell Kristin , Convery Mary Susan , Rauch Paula K. 
Published: May 2018

81 Background: Parents with dependent children express concerns about cancer’s impact on children, and describe challenges with communication, such as deciding how to share news of a diagnosis (Asbury et al., 2014). Though open communication may contribute to better adjustment in children (Lindqvist et al., 2007), little is known about how parents typically talk to children at different developmental stages about their illness, and how soon information is shared after diagnosis. Methods: Five clinicians from a well-established parent guidance program provided 109 consultations to patients (68% female) treated in an urban Comprehensive Cancer Center and/or their co-parent. Consults occurred in outpatient offices (29%), inpatient units (37%) and by telephone (34%). Afterward, clinicians completed a questionnaire about parents’ communication with their children about cancer. Descriptive statistics summarize information shared by patient groups with different characteristics. Results: Children of patients ranged in age from several months old to mid-20’s. Cancer was recurrent in nearly 30% and metastatic in over half, and time since initial diagnosis ranged from within the past month to over 3 years ago. 39% of parents diagnosed in the past month had referred to their illness as “cancer” to children; 67% of those diagnosed 1-3 months ago, and 80-82% of parents diagnosed 4 or more months ago had named the illness “cancer.” Only 27% of parents whose oldest child was between 3-6 yrs, vs. 92% of parents whose oldest child was 18-21 years, used the term “cancer.” Clinician ratings indicated that 42% of parents with eldest child of 3-6 yrs would strongly agree that open communication about the illness would benefit children, vs. 61% of parents whose oldest child was 18-21 years. Conclusions: Many parents believe open communication about their cancer diagnosis will benefit children, yet about a fifth of parents had not used the word “cancer,” even three or more years after initial diagnosis. Language used to describe the illness to children relates both to children’s developmental stage and recency of the diagnosis. Results have implications for the design of parent guidance interventions.
The Ovarian cancer Prognosis And Lifestyle (OPAL) study.
Authors: Webb Penelope M , deFazio Anna , Obermair Andreas , Grant Peter T. , Friedlander Michael , Beesley Vanessa , Nagle Christina ,   The OPAL Study Group
Published: May 2018

88 Background: Five-year survival after a diagnosis of ovarian cancer (OC) is < 45% and women often ask what they can do, beyond following the recommended treatment, to improve their chance of survival. The OPAL Study addresses the question of whether lifestyle choices during or after treatment could positively impact quality of life (QoL) and, ultimately, survival. Methods: OPAL is a prospective study of Australian women newly diagnosed with primary OC from 2012-15 who agreed to complete questionnaires at baseline, 3, 6, 9, 12, 24, 36 & 48 months after diagnosis. Baseline data include sociodemographic, reproductive & hormonal, medical & family history, and lifestyle (diet, alcohol, smoking, physical activity, sitting time) information. At follow-up, women are asked about their current lifestyle, medication and complementary therapy use, and a range of patient-reported outcomes including the Hospital Anxiety and Depression Scale, Insomnia Severity Index and FACT instruments for ovarian cancer, neurotoxicity and fatigue. 85% also provided a blood sample at recruitment and/or 12 months after diagnosis. Detailed treatment and outcome data are collected annually from medical records. Results: Of 1451 eligible women identified, 219 were excluded and 274 declined leaving a cohort of 958; 72% have high-grade serous and 72% advanced stage disease. Follow-up is now close to 36 months with questionnaire response rates of 85-95% among active participants. At October 2017, we had received 734, 751, 636, 434 and 225 questionnaires at 6, 12, 24, 36 and 48 months, respectively; women have completed a mean of 5 questionnaires (range 1-8). A total of 558 (58%) have experienced disease progression or recurrence, 332 (35%) have died and 300 are still active in the study. The proportion of women reporting clinical levels of anxiety ranges from 6-9% at each time-point, depression from 5-7%, insomnia from 9-14% and fatigue from 30-57%. Conclusions: This is the first prospective study to collect detailed lifestyle, QoL, clinical and outcome information from a large population-based cohort of women newly diagnosed with OC. It provides a valuable resource to identify relationships between potentially modifiable aspects of lifestyle and outcomes (QoL & survival) in women with OC.
T Cells Genetically Modified to Express an Anti–B-Cell Maturation Antigen Chimeric Antigen Receptor Cause Remissions of Poor-Prognosis Relapsed Multiple Myeloma
Authors: Brudno Jennifer N. , Maric Irina , Hartman Steven D. , Rose Jeremy J. , Wang Michael , Lam Norris , Stetler-Stevenson Maryalice , Salem Dalia , Yuan Constance , Pavletic Steven , Kanakry Jennifer A. , Ali Syed Abbas , Mikkilineni Lekha , Feldman Steven A. , Stroncek David F. , Hansen Brenna G. , Lawrence Judith , Patel Rashmika , Hakim Frances , Gress Ronald E. , Kochenderfer James N. 
Published: May 2018

Purpose Therapies with novel mechanisms of action are needed for multiple myeloma (MM). T cells can be genetically modified to express chimeric antigen receptors (CARs), which are artificial proteins that target T cells to antigens. B-cell maturation antigen (BCMA) is expressed by normal and malignant plasma cells but not normal essential cells. We conducted the first-in-humans clinical trial, to our knowledge, of T cells expressing a CAR targeting BCMA (CAR-BCMA). Patients and Methods Sixteen patients received 9 × 106 CAR-BCMA T cells/kg at the highest dose level of the trial; we are reporting results of these 16 patients. The patients had a median of 9.5 prior lines of MM therapy. Sixty-three percent of patients had MM refractory to the last treatment regimen before protocol enrollment. T cells were transduced with a γ-retroviral vector encoding CAR-BCMA. Patients received CAR-BCMA T cells after a conditioning chemotherapy regimen of cyclophosphamide and fludarabine. Results The overall response rate was 81%, with 63% very good partial response or complete response. Median event-free survival was 31 weeks. Responses included eradication of extensive bone marrow myeloma and resolution of soft-tissue plasmacytomas. All 11 patients who obtained an anti-MM response of partial response or better and had MM evaluable for minimal residual disease obtained bone marrow minimal residual disease–negative status. High peak blood CAR+ cell levels were associated with anti-MM responses. Cytokine-release syndrome toxicities were severe in some cases but were reversible. Blood CAR-BCMA T cells were predominantly highly differentiated CD8+ T cells 6 to 9 days after infusion. BCMA antigen loss from MM was observed. Conclusion CAR-BCMA T cells had substantial activity against heavily treated relapsed/refractory MM. Our results should encourage additional development of CAR T-cell therapies for MM.
Race and Ethnicity in the Evidence for Integrating Palliative Care Into Oncology
Authors: Pirl William F. , Saez-Flores Estefany , Schlumbrecht Matthew , Nipp Ryan , Traeger Lara N. , Kobetz Erin 
Published: May 2018

Purpose: ASCO recommends early involvement of palliative care for patients with advanced cancers on the basis of evidence from 18 randomized trials. We examined racial and ethnic minority representation in these trials and the role of race and ethnicity in the statistical analyses. The goal was to identify specific gaps in the palliative care evidence base for these individuals and potential strategies to address them. Methods: We reviewed the 18 trials cited in the 2012 and 2017 ASCO clinical statements on integrating palliative care into oncology. We extracted data on the reporting and categorization of race and ethnicity, on the enrollment of specific racial and ethnic minority groups, and on how race and ethnicity were addressed in the analyses. Results: One third of patient trials reported representation of specific racial and ethnic minority groups, one third reported rates of “white” versus “other,” and one third did not report race or ethnicity data. Among the patient trials with race and ethnicity data, 9.9% of participants were Asian, 8.8% Hispanic/Latino, and 5.7% African American. Analyses that used race and ethnicity were primarily baseline comparisons among randomized groups. Conclusion: Race and ethnicity were inconsistently reported in the trials. Among those that provided race and ethnicity data, representation of specific racial and ethnic minority groups was low. In addition to more research in centers with large minority populations, consistent reporting of race and ethnicity and supplementary data collection from minority patients who participate in trials may be strategies for improvement.
Assessment of Provider Adherence to Recommended Monitoring Parameters for Oral Anticancer Medications
Authors: Redelico Tyler J. , Walton Suzanne M. , LaFollette Jennifer , Adams Curry Marjorie , Bernal-Mizrachi Leon 
Published: May 2018

Introduction: Oral anticancer medications (OAMs) offer convenient administration but create new challenges with unique toxicity profiles, specific monitoring parameters and non-continuous dosing schedules. We evaluated provider compliance with US Food and Drug Administration (FDA) drug labeling-specified monitoring parameters for commonly dispensed OAMs at a public academic health system. Methods: A retrospective chart review of patients receiving OAMs was conducted at Grady Health System between July 2015 and June 2016. Patients included in the evaluation were dispensed one of the ten most common OAMs used in our cancer center. Laboratory data and provider documentation were collected and compared to FDA drug labeling-specified monitoring parameters, and the primary outcome was the percentage of fully-compliant cycles. Secondary outcomes included patient adherence assessed by provider documentation and fill history. Descriptive statistics were used to evaluate the data. Results: The initial report comprised 422 patients, of which 77 patients with a total of 349 treatment cycles were included for final analysis. One hundred twenty-six (36.1%) of the treatment cycles were fully compliant with the FDA drug labeling-specified monitoring parameters. Sixty-four of the 199 (32.2%) applicable clinic notes documented patient adherence, and 15 (39.5%) of 38 patients were adherent based on fill history. Conclusion: This study revealed low compliance with FDA-recommended monitoring parameters for commonly dispensed OAMs at our institution. In addition, this study confirmed national concerns about adherence to oral regimens. It also suggests that provider compliance with monitoring parameters is an area that needs to be addressed in order to improve the ambulatory OAM process.
Risk Factors for Cardiovascular Disease Among Thyroid Cancer Survivors: Findings From the Utah Cancer Survivors Study
Authors: Park Jihye , Blackburn Brenna E , Ganz Patricia A , Rowe Kerry , Snyder John , Wan Yuan , Deshmukh Vikrant , Newman Michael , Fraser Alison , Smith Ken , Herget Kim , Kirchhoff Anne C , Abraham Dev , Kim Jaewhan , Monroe Marcus , Hashibe Mia 
Published: May 2018

AbstractContextThyroid cancer survivors are at high risk of developing multiple cardiac and vascular conditions as consequence of cancer diagnosis and treatment. However, it is still unclear how the baseline and prognostic factors, as well as cancer treatments, play a role in increasing cardiac and vascular disease risk among thyroid cancer survivors.ObjectiveTo investigate the association between potential risk factors, treatment effects, and cardiovascular disease (CVD) outcomes in thyroid cancer survivors.Design, Setting, PatientsPrimary thyroid cancer survivors, diagnosed from 1997 to 2012 (n = 3822), were identified using the statewide Utah Population Database. The medical records were used to ascertain information on risk factors and CVD outcomes. Cox proportional hazards models were used to assess the risk of CVD with baseline demographic data and clinical factors.ResultsAmong thyroid cancer survivors, age and year at cancer diagnosis, cancer stage, sex, baseline body mass index, baseline comorbidities, and TSH suppression therapy were significantly associated with CVD risk 1 to 5 years after cancer diagnosis. Patients who were male, overweight or obese, older at cancer diagnosis, and diagnosed with cancer since 2005 had an increased risk of CVD compared with patients who were female, had a normal body mass index, were younger at cancer diagnosis, and diagnosed with cancer from 1997 to 1999. Administration of TSH suppression therapy, distant metastases at cancer diagnosis, and a higher Charlson comorbidity index score were associated with an increased CVD risk among thyroid cancer survivors.ConclusionsOur findings suggest that examining the effect of thyroid cancer diagnosis, cancer treatment, and demographic characteristics on the risk of CVD is critical.
Evaluation of phylogenetic reconstruction methods using bacterial whole genomes: a simulation based study
Authors: Lees John A. , Kendall Michelle , Parkhill Julian , Colijn Caroline , Bentley Stephen D. , Harris Simon R. 
Published: May 2018

Background: Phylogenetic reconstruction is a necessary first step in many analyses which use whole genome sequence data from bacterial populations. There are many available methods to infer phylogenies, and these have various advantages and disadvantages, but few unbiased comparisons of the range of approaches have been made. Methods: We simulated data from a defined 'true tree' using a realistic evolutionary model. We built phylogenies from this data using a range of methods, and compared reconstructed trees to the true tree using two measures, noting the computational time needed for different phylogenetic reconstructions. We also used real data from Streptococcus pneumoniae alignments to compare individual core gene trees to a core genome tree. Results: We found that, as expected, maximum likelihood trees from good quality alignments were the most accurate, but also the most computationally intensive. Using less accurate phylogenetic reconstruction methods, we were able to obtain results of comparable accuracy; we found that approximate results can rapidly be obtained using genetic distance based methods. In real data we found that highly conserved core genes, such as those involved in translation, gave an inaccurate tree topology, whereas genes involved in recombination events gave inaccurate branch lengths. We also show a tree-of-trees, relating the results of different phylogenetic reconstructions to each other. Conclusions: We recommend three approaches, depending on requirements for accuracy and computational time. For the most accurate tree, use of either RAxML or IQ-TREE with an alignment of variable sites produced by mapping to a reference genome is best. Quicker approaches that do not perform full maximum likelihood optimisation may be useful for many analyses requiring a phylogeny, as generating a high quality input alignment is likely to be the major limiting factor of accurate tree topology. We have publicly released our simulated data and code to enable further comparisons.
DOLORisk: study protocol for a multi-centre observational study to understand the risk factors and determinants of neuropathic pain
Authors: Pascal Mathilde M.V. , Themistocleous Andreas C. , Baron Ralf , Binder Andreas , Bouhassira Didier , Crombez Geert , Finnerup Nanna B. , Gierthmühlen Janne , Granovsky Yelena , Groop Leif , Hebert Harry L. , Jensen Troels S. , Johnsen Kristinn , McCarthy Mark I. , Meng Weihua , Palmer Colin N.A. , Rice Andrew S.C. , Serra Jordi , Solà Romà , Yarnitsky David , Smith Blair H. , Attal Nadine , Bennett David L.H. 
Published: May 2018

Background: Neuropathic pain is an increasingly prevalent condition and has a major impact on health and quality of life. However, the risk factors for the development and maintenance of neuropathic pain are poorly understood. Clinical, genetic and psychosocial factors all contribute to chronic pain, but their interactions have not been studied in large cohorts. The DOLORisk study aims to study these factors. Protocol: Multicentre cross-sectional and longitudinal cohorts covering the main causes leading to neuropathic pain (e.g. diabetes, surgery, chemotherapy, traumatic injury), as well as rare conditions, follow a common protocol for phenotyping of the participants. This core protocol correlates answers given by the participants on a set of questionnaires with the results of their genetic analyses. A smaller number of participants undergo deeper phenotyping procedures, including neurological examination, nerve conduction studies, threshold tracking, quantitative sensory testing, conditioned pain modulation and electroencephalography. Ethics and dissemination: All studies have been approved by their regional ethics committees as required by national law. Results are disseminated through the DOLORisk website, scientific meetings, open-access publications, and in partnership with patient organisations. Strengths and limitations: Large cohorts covering many possible triggers for neuropathic painMulti-disciplinary approach to study the interaction of clinical, psychosocial and genetic risk factorsHigh comparability of the data across centres thanks to harmonised protocolsOne limitation is that the length of the questionnaires might reduce the response rate and quality of responses of participants
Can improved diagnostics reduce mortality from Tuberculous meningitis? Findings from a 6.5-year cohort in Uganda
Authors: Cresswell Fiona V. , Bangdiwala Ananta S. , Bahr Nathan C. , Trautner Emily , Nuwagira Edwin , Ellis Jayne P. , Rajasingham Radha , Rhein Joshua , Williams Darlisha A. , Muzoora Conrad , Elliott Alison M. , Meya David B. , Boulware David R. 
Published: May 2018

Background: Tuberculous meningitis (TBM) is the second most common cause of meningitis in sub-Saharan Africa and is notoriously difficult to diagnose. We describe the impact of improved TBM diagnostics over 6.5 years at two Ugandan referral hospitals. Methods: Cohort one received cerebrospinal fluid (CSF) smear microscopy only (2010-2013). Cohort two received smear microscopy and Xpert MTB/Rif (Xpert) on 1ml unprocessed CSF at physician discretion (2011-2013). Cohort three received smear microscopy, routine liquid-media culture and Xpert on large volume centrifuged CSF (2013-2017) for all meningitis suspects with a negative CSF cryptococcal antigen. We compared rates of microbiologically confirmed TBM and hospital outcomes over time. Results: 1672 HIV-infected adults presenting with suspected meningitis underwent lumbar puncture, of which 33% (558/1672) had negative CSF cryptococcal antigen and 12% (195/1672) were treated for TB meningitis. Over the study period, microbiological confirmation of TBM increased from 3% to 41% (P<0.01) and there was a decline in in-hospital mortality from 57% to 41% (P=0.27) amongst those with a known outcome. Adjusting for definite TBM diagnosis and antiretroviral therapy use, and using imputed data, assuming 50% of those with an unknown outcome died, the odds of dying were nearly twice as high in cohort one (adjusted odds ratio 1.7, 95% CI 0.7 to 4.4) compared to cohort three. Sensitivity of Xpert was 63% (38/60) and culture was 65% (39/60) against a composite reference standard. Conclusions: As TBM diagnostics have improved, microbiologically-confirmed TBM diagnoses have increased and in-hospital mortality has declined. Yet, mortality due to TB meningitis remains unacceptably high and further measures are needed to improve outcomes from TBM in Uganda.
Botanical and floristic composition of the Historical Herbarium of Leonhard Rauwolf collected in the Near East (1573­1575)
Authors: Ghorbani Abdolbaset , Wieringa Jan J. , Boer Hugo J. de , Porck Henk , Kardinaal Adriaan , Andel Tinde van 
Published: May 2018

AbstractThe German doctor and botanist Leonhard Rauwolf (1535­1596) was the first post­medieval European to travel to the Levant and Mesopotamia. The travel account that he published on his hazardous journey (1573­1575) is well studied, but the plants he collected during his travels have hardly been subjected to scientific study. The fourth volume of Rauwolf’s 16th century book herbarium includes plant specimens collected from the area encompassing modern­day Lebanon, Syria and Iraq. We digitized this valuable historic collection, identified all specimens in the herbarium, analyzed its floristic composition, transcribed and translated the Latin and German texts accompanying each specimen and updated the names with the latest accepted nomenclature. The herbarium book includes 191 specimens representing 183 species belonging to 64 families. It includes original specimens of Linnaean type illustrations as well as historical crop cultivars from the Near East. The Rauwolf Herbarium gives a unique insight in the exotic, unknown and useful species of the Near East from the perspective of a 16th century European botanist.
Grassroots Agency: Participation and Conflict in Buenos Aires Shantytowns seen through the Pilot Plan for Villa 7 (1971–1975)
Authors: Massidda Adriana Laura 
Published: May 2018

In 1971, after more than a decade of national and municipal policies aimed at the top-down removal of shantytowns, the Buenos Aires City Council approved the Plan Piloto para la Relocalización de Villa 7 (Pilot Plan for the Relocation of Shantytown 7; 1971–1975, referred to as the Pilot Plan hereinafter). This particular plan, which resulted in the construction of the housing complex, Barrio Justo Suárez, endures in the collective memory of Argentines as a landmark project regarding grassroots participation in state housing initiatives addressed at shantytowns. Emerging from a context of a housing shortage for the growing urban poor and intense popular mobilizations during the transition to democracy, the authors of the Pilot Plan sought to empower shantytown residents in novel ways by: 1) maintaining the shantytown’s location as opposed to eradication schemes that relocated the residents elsewhere, 2) formally employing some of the residents for the stage of construction, as opposed to “self-help” housing projects in which the residents contributed with unpaid labor, and 3) including them in the urban and architectural design of the of the new housing.
This paper will examine the context in which the Pilot Plan was conceived of as a way of re-assessing the roles of the state, the user, and housing-related professionals, often seen as antagonistic. The paper argues that residents’ fair participation and state intervention in housing schemes are not necessarily incompatible, and can function in specific social and political contexts through multi-actor proposals backed by a political will that prioritizes grassroots agency.