bluuebunny/crossref_metadata_2025_split huggingface dataset:
Assessing the Appropriateness of the EQ-5D for Duchenne Muscular Dystrophy: A Patient-Centered Study
Authors: Crossnohere Norah L. , Fischer Ryan , Lloyd Andrew , Prosser Lisa A. , Bridges John F. P. 
Published: January 2021

Background Duchenne muscular dystrophy is a rare degenerative neuromuscular disorder with pediatric onset. Recent approvals in Duchenne have placed attention on the economic evaluation in pricing and reimbursement decisions across a range of rare conditions. We sought to assess the appropriateness of the EQ-5D, a common measure of generic health state utility, for use among patients and caregivers affected by Duchenne. Methods An international, cross-sectional sample of adults with Duchenne and caregivers reported patient health status using self- or proxy-reported EQ-5D-3L. Appropriateness was assessed across 6 domains of concern raised by stakeholders in Duchenne. These concerns were that the EQ-5D/EQ-VAS would not capture meaningful differences in health status, correlate with disease-specific measures, reflect real health status, exhibit face validity, be accurately interpreted, and be low burden. We evaluated these concerns by comparing EQ-5D index score and EQ-VAS scores to other condition-specific functional measures and open- and closed-ended questions. Results In total, 263 participants (74% response) completed the survey, 24% of whom were adult patients. Most participants lived in the United States or United Kingdom (58%). Patient age ranged from 1 to 48 y. EQ-5D index was higher in ambulatory than nonambulatory patients (0.60 v. 0.30, P < 0.001) and was negatively correlated with upper limb impairment ( r = 0.61, P < 0.001). Three-quarters of respondents agreed that EQ-5D measured real health status (74%). Most respondents interpreted EQ-VAS anchors of best and worst imaginable health as full health (61%) and death/near death (58%). Respondents indicated the EQ-5D was easy to understand (86%) and answer (71%). Conclusions Contrary to anecdotal concerns, we found support for the appropriateness of EQ-5D to assess health status in Duchenne. While other measures may be more sensitive to specific outcomes in Duchenne, there may be some value in results using the EQ-5D measure.
Is Easier Better Than Harder? An Experiment on Choice Experiments for Benefit-Risk Tradeoff Preferences
Authors: Yang Jui-Chen , Reed Shelby D. , Hass Steve , Skeen Mark B. , Johnson F. Reed 
Published: January 2021

Objectives To test the convergent validity of simple and more complex study designs in a discrete-choice experiment (DCE) of multiple sclerosis (MS) treatment preferences. Methods Five hundred US adults with MS completed an online DCE survey. Respondents answered 8 choice questions with pairs of constructed MS treatment profiles defined by delays in problems with walking, delays in problems with cognition, thyroid disorders, and 10-y risks of kidney failure and serious brain infection (i.e., progressive multifocal leukoencephalopathy [PML]). Four hundred respondents completed choice questions using 4 levels for all attributes, except thyroid disorders with 3 levels. One hundred respondents completed choice questions using only the 2 extreme attribute levels of the 4-level version. Random-parameters logit models were used to estimate choice-model parameters. Results Respondents viewing the 4-level and 2-level versions agreed on the relative importance of the 3 most important attributes: cognition, walking, and PML. Respondents viewing the 4-level version indicated much stronger disutility for a 0% to 0.5% increase in kidney-failure risk than those viewing the 2-level version where the risk for kidney failure increased from 0% to 3%. Otherwise, utilities for other 4-level attributes were approximately linear but with significantly steeper slopes (except for cognition) than the 2-level estimates, indicating that attributes were perceived as more important as the number of levels increased. Conclusions Although the relative importance of some attributes was similar, the 2-level and 4-level versions generally failed to demonstrate convergent validity. If the study goal is attribute rankings, a 2-level version could be adequate. If goals include quantifying tradeoffs among attribute levels, more complex designs can help respondents discriminate among attribute levels. Reductions in measurement error using fewer attribute levels appear to have come at the expense of less discriminating evaluations.
Classifying interval cancers as false negatives or newly occurring in fecal immunochemical testing
Authors: Hsu Wen-Feng , Hsu Chen-Yang , Yen Amy Ming-Fang , Chen Sam Li-Sheng , Chiu Sherry Yueh-Hsia , Fann Jean Ching-Yuan , Lee Yi-Chia , Chiu Han-Mo , Chen Hsiu-Hsi 
Published: January 2021

Objective To classify interval colorectal cancers as false negatives or newly occurring cases in a biennial Fecal immunochemical test (FIT) screening program and by various interscreening intervals. Setting Data from the Taiwanese biennial colorectal cancer screening program involving FIT from 2004 to 2014 were used to estimate the incidence rate of asymptomatic colorectal cancer and the rate of its subsequent progression to clinical mode. Methods The sensitivity of detecting asymptomatic colorectal cancers excluding newly developed colorectal cancers was compared to the conventional estimate of sensitivity, the complementary FIT interval cancer rate as a percentage of the expected incidence rate ((1-I/E)%). The relative contribution of newly developed or false-negative cases to FIT interval colorectal cancers was estimated by age and interscreening intervals. Results The Taiwanese biennial fecal immunochemical test screening program had a conventional sensitivity estimate of 70.2%. After newly developed colorectal cancers were separated from FIT interval cancers, the ability to detect asymptomatic colorectal cancers increased to 75.5%. FIT interval colorectal cancers from the biennial program mainly resulted from newly developed colorectal cancers (68.8%). The corresponding figures decreased to 61.1% for the annual program but increased to 74.7% for the triennial program. The preponderance of newly developed colorectal cancers among FIT interval cancers was more prominent in screenees aged 50–59  than in those aged 60–69. Conclusions Newly developed colorectal cancers showed a predominance among the FIT interval colorectal cancers in particular in the younger population screened. It is desirable to identify high-risk individuals to offer them a short interscreening interval or advanced detection methods to reduce their odds of developing interval cancer.
Chaplaincy Care in the MICU: Examining the Association Between Spiritual Care and End-of-Life Outcomes
Authors: Labuschagne Dirk , Torke Alexia , Grossoehme Daniel , Rimer Katie , Rucker Martha , Schenk Kristen , Slaven James E , Fitchett George 
Published: January 2021

Background: Seriously ill patients admitted to the Intensive Care Unit (ICU) experience severe spiritual and existential distress. Patients’ surrogate decision makers face the burden of making complex decisions about their loved ones’ care. Experienced chaplains may play a role in assisting with decision-making, possibly by aligning patients’ values and wishes with treatment plans and avoiding non-beneficial aggressive measures. Objectives: To identify associations between chaplaincy care and length of stay (LOS) in the medical ICU (MICU). Methods: This was a retrospective observational study of usual spiritual care in the adult MICUs of 4 medical centers in the United States over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information. Through bivariate and multivariable analyses associations between spiritual care and LOS were examined. Results: In multivariable analysis of the 254 patients, receiving spiritual care was associated with an increased likelihood of being in a higher LOS tertile (adjusted odds ratio = 2.94, p < .001). In post hoc bivariate analysis, cases receiving spiritual care within the first 48 hours of MICU admission revealed a trend toward lower LOS (p = .181). Conclusion: Spiritual care in the MICU was associated with longer LOS. Early intervention by chaplains who are well-integrated in the ICU may assist patients and their loved ones in coming to terms with grave illness and making difficult treatment decisions. Further well-designed studies of spiritual care interventions that may affect outcomes are needed.
What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation
Authors: Grill Katherine B. , Wang Jichuan , Scott Rachel K. , Benator Debra , D’Angelo Lawrence J. , Lyon Maureen E. ,   for the Palliative Care Consortium
Published: January 2021

Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
Histopathological Subtypes and PD-L1 Expression in Primary Urethral Adenocarcinoma: A Series of 5 Cases
Authors: Padilla-Ansala Carlos , García-Fernández Eugenia , González-Peramato Pilar 
Published: January 2021

Background and Objectives Urethral adenocarcinoma is a rare disease with poor prognosis that can display multiple histologic patterns and has an unclear histogenesis. Radical surgery with extensive periurethral resection is the preferred therapeutic approach. Both chemotherapy and radiotherapy have been used as complementary treatment options. Due to the tendency of these tumors to recur, treatment-associated complications, and the limited choice of therapeutic options, patient management can be difficult. Given the lack of literature regarding immunotherapy in urethral adenocarcinoma, our objective was to explore the expression of programmed death receptor-ligand 1 (PD-L1) throughout the different histological subtypes of primary urethral adenocarcinoma. Methods We reviewed all primary urethral adenocarcinomas diagnosed at our hospital between 1965 and 2019, performed immunohistochemical assays on the tissue blocks, classified them according to their histology and origin, and performed PD-L1 (22C3) immunohistochemistry assays in all cases. Results We found a total of 5 cases of primary urethral adenocarcinoma. All of the patients were women. One of the cases was a cribriform adenocarcinoma, 2 were columnar-mucinous adenocarcinomas, and 2 were clear cell adenocarcinomas. One of the clear cell adenocarcinomas strongly expressed PD-L1. In addition, a profuse inflammatory infiltration constituted by CD3-positive and CD8-positive T lymphocytes within tumor cells was observed in this case. None of the other cases showed PD-L1 expression. Conclusions In conclusion, some urethral adenocarcinomas may strongly express PD-L1 and thus could potentially allow the use of immunotherapy in selected cases of advanced or recurrent adenocarcinoma.
Virtual monitoring for stable chronic hepatitis B patients does not reduce adherence to medications: A randomised controlled study
Authors: Kumar Rajneesh , Yee Mei-Ling , Goh George BB , Chia Pei-Yuh , Lee Hwei-Ling , Xin X , Teo Pek SE , Ekstrom Victoria SM , Tan Jin YT , Cheah Mark CC , Wang Yu T , Chang Jason PE , Tan Chee-Keat , Tan Hiang Keat , Krishnamoorthy Thinesh L , Chow Wan-Cheng 
Published: January 2021

Introduction Chronic hepatitis B (CHB) remains common in endemic regions, causing significant healthcare burden. Patients with CHB may need to be adherent to nucleoside analogue (NA) for a long period of time to prevent complications. This study aims to investigate the safety, efficacy and patient experience of a virtual monitoring clinic (VMC) in monitoring stable patients taking NA for CHB. Methods Patients on NA and regular follow-up were randomised to either VMC alternating with doctors’ clinic visit or to a control group in which they continued standard follow-up by doctors. Therapy adherence was measured by medication possession ratio (MPR) for NA therapy, incidence of virological breakthrough and hepatocellular carcinoma (HCC) development at two years of follow-up. Patient acceptance was measured on a Likert scale of 1–10. Results A total 192 patients completed follow-up: 94 and 98 patients in the VMC and control groups, respectively. Mean age was 60.6 ± 10.8 years, with 95.3% Chinese ethnicity and 64.1% males. Age, gender, race, educational, employment and financial status were similar in both groups. Upon study completion, the majority of patients – 76 (80.9%) in VMC group and 74 (75.5%) in control group – had MPR ≥0.8; 88.8% were satisfied and rated VMC better than a traditional follow-up clinic with doctors only. More than 85% of patients rated ≥8/10 on the Likert scale for VMC, and preferred VMC over traditional clinic visits. Clinical outcomes observed were HCC development in one (1.1%) in the VMC group and four (4.1%) in the control group ( p = 0.369). Two (2.1%) and one (1.0%) virological breakthroughs were observed in the VMC and control groups, respectively ( p = 0.615). No incidence of HCC or abnormal blood tests were missed in the VMC arm. Discussion VMC is a viable and safe clinical model for monitoring stable CHB patients on NA therapy without compromising patients’ adherence to medications and is preferred by patients.
The social worker in community mental health teams: Findings from a national survey
Authors: Abendstern Michele , Wilberforce Mark , Hughes Jane , Arandelovic Andelijia , Batool Saqba , Boland Jennifer , Pitts Rosa , Challis David 
Published: January 2021

Summary Social workers have been members of community mental health teams (CMHTs) for many years. However, a combination of factors has resulted in their removal from CMHTs in some areas in recent years. This study presents findings from a 2018 national survey of CMHT team managers (44% response rate), to ascertain the current position of the social worker within CMHTs in England. Analyses focussed on membership, roles and tasks, and change within the previous 12 months. Descriptive statistics were used to analyse the quantitative data and content analysis to interpret free text comments. Findings Social workers were found to undertake a variety of generic roles and tasks but were reported to do so proportionally less often than nurses. A large minority were involved in non-traditional social work tasks such as monitoring medication. In one-fifth of teams, managers thought they had too few social workers. Free text comments suggested that managers valued social workers for their social perspective and expressed concern regarding their removal or the curtailment of their role, perceiving this as having a negative effect on overall CMHT service delivery. Applications The findings provide evidence of some instability in the position of social workers within CMHTs in relation to both their membership and their involvement in traditional and non-traditional roles and tasks. Free text comments suggest that if a biopsychosocial model of mental health support, now recognised as essential to long-term wellbeing, is to be achieved, a social work presence in CMHTs is required.
The value of 18F-FDG-PET-CT in the management of infective native aortic aneurysms
Authors: Hannsberger Daniel , Heinola Ivika , di Summa Pietro Giovanni , Sörelius Karl 
Published: January 2021

Objective The objective of this systematic literature review was to explore the value of positron emission tomography combined with low-dose computed tomography (18F-FDG-PET-CT) in the diagnostics of infective native aortic aneurysm (INAA). Methods A systematic literature review was performed using the search terms mycotic- and infected aortic aneurysms in Medline and Sciencedirect databases, published between 1 January 2000 and 1 January 2020. Using the PRISMA statement, articles were scrutinized according to a predefined protocol including: timing of 18F-FDG-PET-CT examination, the maximum standardized uptake value (SUVmax), additional findings on examination, and findings on repeated scanning of 18F-FDG-PET-CT. Results Four studies were included in the analysis, comprising a total of 11 patients. Two studies were single case reports, and two were small case series, all were graded to be of low quality with high risk of bias. All patients were examined with a preoperative 18F-FDG-PET-CT, and 10 (91%) had increased 18F-FDG uptakes. The median SUVmax value was 6.53, range 4.46–9.23. The mean duration of antibiotic therapy prior to 18F-FDG-PET-CT was not known. Two patients were examined with repeated 18F-FDG-PET-CT examinations after treatment, where a decrease in SUVmax values could be demonstrated after successful treatment. Conclusion The literature on 18F-FDF-PET/CT for diagnosing infective native aortic aneurysms is scarce. However, there might be a role for 18F-FDF-PET/CT in the management of the disease, in particular for patients with clinical suspicion of INAA without convincing findings on CT. SUVmax values ranging from 4.5 to 6.5 could be guiding and suggestive of metabolic activity in agreement of INAA. However, further conclusions on its usefulness, robustness and specific SUVmax values are premature, and a definitive cut-off value is probably not attainable.
Pharmacists’ knowledge, experiences and perceptions of treatments for attention-deficit/hyperactivity disorder
Authors: Yuen Terence , Zhang Hantao , Bonin Robert P. 
Published: January 2021

Background: Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder that begins in childhood and often persists into adulthood. ADHD increases the risk of various negative impacts, and pharmacists are well positioned to address these issues in the community. Objectives: This survey study aims to first identify pharmacists’ ADHD knowledge gaps and experience with ADHD management and to second assess their preferences for continuing education and their experience with sleep-related issues in ADHD. Methods: A survey was sent to Part A Ontario pharmacists with active licenses who opted in to receive research-related emails ( n = 6022). Descriptive statistics were used to analyze survey data, while free-form answers were pooled and evaluated for common themes and trends. Results: A total of 238 complete responses were received. The average self-reported ADHD knowledge was 5.8 ± 1.96 on a 10-point scale. There was no correlation between the number of years of practice as a pharmacist, the number of working hours per week or the location of practice on pharmacists’ self-reported knowledge scores. There was a significant difference in self-reported knowledge of ADHD between pharmacists who were not aware of the Canadian ADHD Resource Alliance (CADDRA) guidelines (5.1 ± 2.1) and those who refer to it for standard of care (7.1 ± 1.5). Almost all pharmacists (95%) indicated they could benefit from additional ADHD education, with a strong preference for “online continuing education modules” (81%). The majority of responders considered psychostimulant ADHD medication as the major possible contributor to sleep disturbances (47%) in ADHD, highlighting a need for further education on the inconclusive link between ADHD medication effects on sleep. Conclusion: The study results raise the concern that pharmacists may require additional ADHD education but also show the lack of awareness of available resources, such as the CADDRA guidelines. Can Pharm J (Ott) 2021;154:xx-xx.
Teaching young consumers in Europe: a multicentre qualitative needs assessment with educators on food hygiene and food safety
Authors: Eley C , Lundgren PT , Kasza G , Truninger M , Brown C , Hugues VL , Izso T , Teixeira P , Syeda R , Ferré N , Kunszabo A , Nunes C , Hayes C , Merakou K , McNulty CAM 
Published: January 2021

Aim: Foodborne illnesses have a significant global burden and can be life-threatening, with higher risk in vulnerable groups such as children. SafeConsume is an EU-funded, transdisciplinary project aiming to improve consumers’ food safety behaviour. Developing educational resources on food safety for use in schools has potential to improve teaching of our young consumers. The aim of this study was to explore school educators’ attitudes, behaviours and knowledge towards food hygiene, safety and education. Methods: Focus groups and interviews in England, France, Portugal and Hungary explored educator knowledge, skills, intentions and beliefs around educating young people (11–18 years) about food safety. Data were analysed using NVivo and emerging themes were applied to the Theoretical Domains Framework. Results: A total of 48 educators participated. Knowledge, confidence and skills to teach food safety to young people varied depending on background and training. Educators reported they had a role to teach food safety to young people, were positive about delivering education and optimistic they could improve students’ food safety behaviour. Barriers to teaching included lack of national curriculum coverage, limited time and money, and lack of facilities. Educators reported that social influences (family, celebrity chefs, public health campaigns and social media) were important opportunities to improve young peoples’ awareness of food safety and consequences of foodborne illness. Conclusion: Educator food safety expertise varied; training could help to optimise educator knowledge, confidence and skills. Ministries of Health and Education need encouragement to get food safety incorporated further into school curricula across Europe, so schools will be motivated to prioritise these topics.