39 research outputs found
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Use of an Online Crowdfunding Platform for Unmet Financial Obligations in Cancer Care.
This cross-sectional study identified characteristics of patients using an online crowdfunding platform for unmet financial obligations associated with cancer care
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Qualitative Analysis of the Content Found in Online Discussion Boards for Urethral Stricture Disease and Urethroplasty.
ObjectiveTo describe the patient experience and chief concerns with urethroplasty to improve physician understanding and patient education. Online discussion boards allow patients with urethral stricture disease (USD) to connect with other USD patients. It is unknown how men use these web resources and what information is available about urethroplasty.MethodsThree online forums featuring urethroplasty were identified by Google search. Thematic analysis categorized the content of posts using manually applied codes, with inter-rater reliability and descriptive statistics generated by Dedoose (Los Angeles, CA).ResultsA total of 140 unique posters contributed 553 posts to the forums. Posts were categorized as information support (n = 651), issues posturethroplasty (n = 470), own experience preurethroplasty (n = 336), feelings towards other posters (n = 312), what to expect posturethroplasty (n = 265), feelings after urethroplasty (n = 228), and considerations before urethroplasty (n = 134). Experience navigating the healthcare system with USD (n = 141) and weak urine stream (n = 70) were the most frequent preurethroplasty complaints. Postoperative pain (n = 164) was the most frequent issue. Patients expressed more positivity (n = 126) and satisfaction (n = 120) than negativity (n = 33) with urethroplasty.ConclusionPatients participated in online discussions to share experiences with USD and urethroplasty, receive emotional support, and find answers. Men were more often satisfied than not with their urethroplasty outcomes, with 88% of postoperative feelings coded as positive or satisfied compared to negative. This study provides physicians with insight into the experiences of patients and how to best educate them
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Perspectives From Authors and Editors in the Biomedical Disciplines on Predatory Journals: Survey Study.
BackgroundPredatory journals fail to fulfill the tenets of biomedical publication: peer review, circulation, and access in perpetuity. Despite increasing attention in the lay and scientific press, no studies have directly assessed the perceptions of the authors or editors involved.ObjectiveOur objective was to understand the motivation of authors in sending their work to potentially predatory journals. Moreover, we aimed to understand the perspective of journal editors at journals cited as potentially predatory.MethodsPotential online predatory journals were randomly selected among 350 publishers and their 2204 biomedical journals. Author and editor email information was valid for 2227 total potential participants. A survey for authors and editors was created in an iterative fashion and distributed. Surveys assessed attitudes and knowledge about predatory publishing. Narrative comments were invited.ResultsA total of 249 complete survey responses were analyzed. A total of 40% of editors (17/43) surveyed were not aware that they were listed as an editor for the particular journal in question. A total of 21.8% of authors (45/206) confirmed a lack of peer review. Whereas 77% (33/43) of all surveyed editors were at least somewhat familiar with predatory journals, only 33.0% of authors (68/206) were somewhat familiar with them (P<.001). Only 26.2% of authors (54/206) were aware of Beall's list of predatory journals versus 49% (21/43) of editors (P<.001). A total of 30.1% of authors (62/206) believed their publication was published in a predatory journal. After defining predatory publishing, 87.9% of authors (181/206) surveyed would not publish in the same journal in the future.ConclusionsAuthors publishing in suspected predatory journals are alarmingly uninformed in terms of predatory journal quality and practices. Editors' increased familiarity with predatory publishing did little to prevent their unwitting listing as editors. Some suspected predatory journals did provide services akin to open access publication. Education, research mentorship, and a realignment of research incentives may decrease the impact of predatory publishing
Management of Renal Cell Carcinoma—Current Practice in Sub-Saharan Africa
There is a global variation in the incidence of renal masses with the developed nations having a greater incidence. About 80–90% of renal malignancies are renal cell carcinomas (RCC) which account for 2–4% of all cancers. In Africa and the Middle East, the age-standardized incidence for RCC is 1.8–4.8/100,000 for males and 1.2–2.2/100,000 for females. The management of renal cell cancer is challenging. A multidisciplinary approach is effective for diagnosis, staging, and treatment. Guidelines recommend active surveillance, thermal ablation, partial nephrectomy, radical nephrectomy, cytoreductive nephrectomy and immunotherapy as various modalities for various stages of RCC. However, open radical nephrectomy is most widely adopted as an option for treatment at various stages of the disease in sub-Saharan Africa due to its cost-effectiveness, applicability at various stages, and the reduced cost of follow-up. Nevertheless, most patients in the region present with the disease in the advanced stage and despite surgery the prognosis is poor
Global Retinoblastoma Presentation and Analysis by National Income Level.
Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs
Global Retinoblastoma Presentation and Analysis by National Income Level
Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- A nd middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs
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Testing the generalizability of ancestry-specific polygenic risk scores to predict prostate cancer in sub-Saharan Africa
Background
Genome-wide association studies do not always replicate well across populations, limiting the generalizability of polygenic risk scores (PRS). Despite higher incidence and mortality rates of prostate cancer in men of African descent, much of what is known about cancer genetics comes from populations of European descent. To understand how well genetic predictions perform in different populations, we evaluated test characteristics of PRS from three previous studies using data from the UK Biobank and a novel dataset of 1298 prostate cancer cases and 1333 controls from Ghana, Nigeria, Senegal, and South Africa.
Results
Allele frequency differences cause predicted risks of prostate cancer to vary across populations. However, natural selection is not the primary driver of these differences. Comparing continental datasets, we find that polygenic predictions of case vs. control status are more effective for European individuals (AUC 0.608–0.707, OR 2.37–5.71) than for African individuals (AUC 0.502–0.585, OR 0.95–2.01). Furthermore, PRS that leverage information from African Americans yield modest AUC and odds ratio improvements for sub-Saharan African individuals. These improvements were larger for West Africans than for South Africans. Finally, we find that existing PRS are largely unable to predict whether African individuals develop aggressive forms of prostate cancer, as specified by higher tumor stages or Gleason scores.
Conclusions
Genetic predictions of prostate cancer perform poorly if the study sample does not match the ancestry of the original GWAS. PRS built from European GWAS may be inadequate for application in non-European populations and perpetuate existing health disparities
Global Retinoblastoma Presentation and Analysis by National Income Level
Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4) were female. Most patients (n = 3685 84.7%) were from low-and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 62.8%), followed by strabismus (n = 429 10.2%) and proptosis (n = 309 7.4%). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 95% CI, 12.94-24.80, and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 95% CI, 4.30-7.68). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs. © 2020 American Medical Association. All rights reserved
Prostate Cancer in Sub Saharan Africa
Prostate cancer is the leading male cancer worldwide. While there are abundant data on the epidemiology, natural history, treatment and outcomes of the disease in the US and many developed countries, prostate cancer is a good example of cancer disparity in that a little is known about the disease in Sub Saharan Africa. Because of the dominant black race in this region and the fact that black men suffer the higher burden of the disease, it is important to understand that cancer in this population. The purpose of this review is to describe the literature of prostate cancer in Sub Saharan Africa. The authors reviewed the published studies on prostate cancer in Sub Saharan Africa available on PubMed. In addition any other accessible study on the topic was included
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The landscape of urological retractions: the prevalence of reported research misconduct.
ObjectivesTo evaluate the landscape of retractions of literature and to determine the prevalence of research misconduct in the field of urology.MethodsThree databases (PUBMED, Embase, Retraction Watch) were queried for all retracted studies on urological topics in both urological and non-urological journals from April 1999 to March 2018. Two reviewers screened the records and determined the final list of articles to be included in the analysis.ResultsA total of 138 articles met the inclusion criteria. Over 80% of retractions occurred after 2009. Retractions originated from 76 different journals (13 urological journals) and 28 countries. The most common reasons for retraction were plagiarism (28%), fake peer review (20%), error (20%), and falsification of data (13%). Misconduct accounted for two-thirds of the retractions (n = 93). A large watermark, indicating retraction of the article, was present in 75% of the manuscripts. Articles were cited a total of 4454 times, 38% of citations happened after retraction. The majority of retracted articles related to urological oncology (70%). The highest number of retractions for an individual author was five. Rates of retraction among popular urological journals since 2010 have increased but remain a small proportion of all publications: BJUI, 0.189%; World Journal of Urology, 0.132%; European Urology, 0.058%; Urology, 0.047%; and Journal of Urology, 0.024%.ConclusionRetractions of urological literature, similarly to retractions of other biomedical literature, have been rising over the last decade. The majority of these retractions stem from research misconduct. Despite retractions, flawed articles continued to be cited