bluuebunny/crossref_metadata_2025_split huggingface dataset:
The Bright Side of the GDPR: Welfare-Improving Privacy Management
Authors: Choe Chongwoo , Matsushima Noriaki , Shekhar Shiva 
Published: November 2024

We study the General Data Protection Regulation (GDPR)’s opt-in requirement in a model with a firm that provides a digital service and consumers who are heterogeneous in their valuations of the firm’s service and the privacy costs incurred when sharing personal data with the firm. We show that the GDPR boosts demand for the service by allowing consumers with high privacy costs to buy the service without sharing data. The increased demand leads to a higher price but a smaller quantity of shared data. If the firm’s revenue is largely usage based rather than data based, then both the firm’s profit and consumer surplus increase after the GDPR, implying that the GDPR can be welfare improving. But if the firm’s revenue is largely from data monetization, then the GDPR can reduce the firm’s profit and consumer surplus. This paper was accepted by D. J. Wu, information systems. Funding: The authors gratefully acknowledge financial support from the Australian Research Council [Grant DP210102015], the Japan Society for the Promotion of Science [KAKENHI Grants JP20H05631, JP21H00702, JP21K01452, JP21K18430, JP23H00818, JP23K20593, and JP23K25515], the Nomura Foundation, the International Joint Research Promotion Program at Osaka University, and the program of the Joint Usage/Research Center for “Behavioral Economics” at the ISER, Osaka University. Although N. Matsushima serves as a member of the Competition Policy Research Center at the Japan Fair Trade Commission (JFTC), the views expressed in this paper are solely ours and should not be attributed to the JFTC. Supplemental Material: The online appendix is available at https://doi.org/10.1287/mnsc.2024.06653 .
A “Snapshot” of Current Practices: How Are Students With Intellectual and Developmental Disabilities Displaying Self-Determination
Authors: Agran Martin , McKissick Bethany , Vach Sarah , Spooner Fred , Voggt Ashley 
Published: November 2024

Abstract
Although self-determination has received increased attention as a critical component in quality education programs, there is limited current research about how and in what way students are displaying self-determined behaviors. To that end, a 29-item questionnaire was developed and 118 school system personnel reported how a sample of students with intellectual and developmental disabilities in different grades employed self-determination strategies. Respondents were predominately White, female, had more than 10 years of experience, and largely worked with students with multiple disabilities at the elementary level. In all, the majority of students across grades were not taught specific self-determination skills. Also, students at the elementary level participated less in attending individualized education program (IEP) meetings or discussing their challenging behaviors than students at the secondary level, and typically received little or no instruction in self-determination. For those students who did receive instruction, self-instruction, self-monitoring, and self-evaluation were several of the strategies reported as being used by students to manage and regulate their behavior. The implications of the findings are discussed.
Quality-of-Life Characteristics of Individuals With Intellectual Disability Entering a Residential College Program
Authors: Lindell Mary 
Published: November 2024

Abstract
The number of postsecondary education (PSE) programs is increasing in the United States and worldwide with the goal of improving quality-of-life (QOL) outcomes for people with intellectual disability (ID). The current study explored if people with ID entering a residential college-based PSE program differed or were the same in their reported QOL outcomes as other young adults with ID. Findings indicate that soon-to-be college students responded similarly to national samples on a majority of QOL indicators. An important difference existed in paid employment; college-bound individuals responded more often that they had a paid job compared to respondents of the national surveys. Implications for studying QOL outcomes of individuals with ID who attend college and for practice and policy are discussed.
Knowledge, Perceptions, Challenges and opportunities in achieving sustainable coverage of mass drug administration towards the control and elimination of Schistosomiasis and Soil Transmitted Helminths in hard-to-reach communities of Ghana
Authors: Forson Akua Obeng , Ayeh-Kumi Patrick F. , Mohammed Abdul Rahim , Sraku Isaac Kwame , Myers-Hansen Gustavus Adolphus , Afrane Yaw Asare 
Published: November 2024

Introduction
In Ghana, schistosomiasis (SCH) and soil-transmitted helminths (STH) infections are of major public health problems in children. In the last decades, various interventions have been instituted by the Ghana Health Service (GHS) in collaboration with non-governmental organizations (NGOs) for the control and subsequent elimination of SCH and STH. However, these infections still remain common in both adults and children in many districts in Ghana. This study aimed to identify challenges in achieving sustainable coverage of mass drug administration for the control of STH and SCH and to explore opportunities to scale up its implementation among people living in hard-to-reach communities.

Method
Twelve focus group discussions (FGDs) with community members were conducted to access challenges to mass drug administration (MDA), and 20 in-depth interviews (IDIs) with key informants were conducted to access opportunities to optimize MDA to control and eliminate soil-transmitted helminth infections and schistosomiasis in hard-to-reach communities.

Results
Results showed participants held the correct notions of SCH and STH, and expressed willingness to participate in the MDA program. However, the lack of community drug distributors (CDDs) in the communities, inadequate and misleading information of MDA activities, and general concern about the adverse effects of MDA medications were some of the challenges identified to hinder MDA operations.

Conclusion
Transitioning from SCH and STH control to elimination goals requires intensive health education campaigns before MDA are conducted in hard-to-reach communities in Ghana. Furthermore, there is a need for political members and policymakers to collaborate in providing scarce and sanitary infrastructure and continuously provide disease-specific information to community members to address and dispel common misconceptions and anxieties regarding the transmission and treatment of SCH and STH.
Endometriosis leading to frequent emergency department visits–women’s experiences and perspectives
Authors: Roman Emanuel Christine , Holter Herborg , Hansson Ida Nygren , Forslund Maria 
Published: November 2024

Background
Endometriosis is a common condition affecting 1–10% of all women. The condition is highly associated with pain. Most women with endometriosis are treated as elective outpatients, but these patients sometimes need to visit the emergency department. The aim of this study was to describe experiences and expectations related to repeated gynaecological emergency (GED) visits among women with endometriosis.

Method
This qualitative study with semi structured interviews were conducted with ten patients diagnosed with endometriosis who visited the GED at a tertiary university hospital four or more times within a 12-month period. Data were analysed by thematic content analysis.

Result
Two main themes was identified which embodied the women’s overall experience, grouped into: “Living with pain” and “Patients´ needs when seeking GED”, with six underlying themes. Several women described their visit to the GED as a “lottery”, as they never knew what kind of treatment they would receive. Being listened to was most important for the women. Individualized care plans did not exist for most of the women in this study, although they repeatedly needed to visit the GED.
“Comparative analysis of predictors of failure for high-flow nasal cannula in bronchiolitis”
Authors: Etrusco Zaroni Santos Ana Carolina , Caiado Carolina Marques , Daud Lopes Alessandra Geisler , de França Gabriela Cunha , Valerio Camila Araujo , Oliveira Danielle Bruna Leal , de Araujo Orlei Ribeiro , de Carvalho Werther Brunow 
Published: November 2024

Objective
To assess a comparative analysis of the ROX index, Wood-Downes-Ferrés score (WDF), p-ROXI, and the SpO2/FiO2 ratio as predictors of high-flow nasal cannula (HFNC) failure in children hospitalized for bronchiolitis.

Methods
Data were extracted from the clinical trial “Comparison between HFNC and NIV in children with acute respiratory failure caused by bronchiolitis” conducted at a tertiary Brazilian hospital (Emergency Department and PICU). The inclusion criteria were children under 2 years of age admitted for bronchiolitis who developed mild to moderate respiratory distress and were eligible for HFNC therapy. Performance was determined by ROC and AUC metrics to define the best sensitivity and specificity for each variable. Children were evaluated at 0 h, 2 h, 6 h, 12 h, 24 h, 48 h, 72 h and 96 h after HFNC therapy initiation.

Results
A total of 126 patients were recruited for this analysis. The median age was 3 months. Ninety-one percent of the patients had an identified viral agent, with RSV being the most common (65%). Twenty-three percent (29/126) of patients experienced failed HFNC therapy and required mechanical ventilation. The best cutoff points at 12 hours were 4.5 for WDF (AUC = 0.83, 0.74–0.92), 8.8 for ROX (AUC = 0.7, 0.54–0.84), 1.45 for p-ROXI (AUC = 0.56, 0.38-0-74), and 269 for SpO2/FiO2 (AUC = 0.64, 0.48–0.74). The scores and indices were also correlated with the PICU and hospital LOS.

Conclusions
The ROX index and WDF were the most accurate scores for assessing HFNC failure considering 12-hour cutoff points.

Trial registration number
U1111-1262-1740; RBR-104z966s. Date of registration: 03/01/2023.
Developing consensus on priorities for preconception care in the general practice setting in the UK: Study protocol
Authors: Schoenaker Danielle , Lovegrove Elizabeth , Santer Miriam , Matvienko-Sikar Karen , Carr Helen , Alwan Nisreen A. , Kubelabo Laura , Davies Nathan , Godfrey Keith M. 
Published: November 2024

Background
Preconception medical, behavioural and socioeconomic risk factors are common among people of reproductive age and can impact pregnancy and offspring outcomes. In line with clinical guidance, primary care practitioners are encouraged to support patients to manage and optimise their health prior to pregnancy. Due to barriers, including lack of time and resources, this support is not currently part of routine practice.

Aim
As a first step towards the co-development of practical and realistic best practice guidance, this study aims to achieve consensus on a list of priority risk factors that can be used in general practice to guide opportunistic preconception care for patients of reproductive age.

Methods
This study protocol was developed with a Public Advisory Group of people of reproductive age, researchers and primary care practitioners. The consensus study will consist of three steps: 1) identifying an initial long-list of candidate risk factors and defining principles for scoring the importance of each risk factor, through a literature review, workshops with people of reproductive age, and interviews with primary care practitioners; 2) stakeholder participant prioritisation of each candidate risk factor for its importance for preconception care through a three-round eDelphi survey; and 3) agreeing on the final priority list through consensus meetings with a selected group of stakeholders. Participants living in the UK will be recruited across two stakeholder groups: people of reproductive age (through the Public Advisory Group and charities) and primary care professionals (through professional organisations).

Ethical approval
This study has been approved by the University of Southampton Faculty of Medicine Ethics Committee (ERGO 83699 and 92950).

Dissemination
All study findings will be shared through stakeholder participants, peer-reviewed publication, lay summary, meetings and conference presentations, and relevant professional and community organisations. Ongoing research will inform implementation of the priority list in clinical practice.
Factors associated with low health-related quality of life in persons with multiple sclerosis: A quantile-based segmentation approach
Authors: Iaquinto Stefania , Ineichen Benjamin Victor , Salmen Anke , Kuhle Jens , Benkert Pascal , Hofer Lisa , Calabrese Pasquale , Kamm Christian P. , Roth Patrick , Zecca Chiara , Ammann Sabin , Pot Caroline , von Wyl Viktor ,   for the Swiss Multiple Sclerosis Registry
Published: November 2024

Background
Improving health-related quality of life (HRQoL) is an important disease management goal in persons with Multiple Sclerosis (PwMS). HRQoL decreases with increasing age and prolonged disease duration; other factors remain less understood.

Objective
To identify associations of multiple sclerosis (MS) disease characteristics and symptom burden with low HRQoL.

Methods
Using the Swiss MS Registry, we applied quantile regression adjusted for age and MS disease duration to determine 25th (low HRQoL) and 75th (high HRQoL) percentiles of the EuroQol-5-Dimension (EQ-5D) distribution for PwMS. We compared PwMS across HRQoL groups by analyzing differences in sociodemographics, symptom burden, MS risk factors, gait impairment, and the MS Severity Score (MSSS), all measured at the same time as HRQoL. The analyses included descriptive methods, multivariable multinomial regression, and simultaneous quantile regression as a sensitivity analysis.

Results
We included 1697 PwMS with median age and time-to-diagnosis of 49 and 9 years. Multivariable regression revealed low HRQoL to be associated with receiving invalidity insurance benefits, reporting depression, muscle weakness, memory problems, pain, and severe gait impairment. The analysis for individuals with available MSSS (n = 937) showed an increasing probability of low HRQoL with higher MSSS.

Conclusion
Our segmentation method identified symptom burden and MS severity as factors associated with low HRQoL. Pharmacological and non-pharmacological MS symptom management, especially for depression, fatigue, pain, and muscle weakness, may warrant increased attention to preserve or improve HRQoL.
The interplay of fear of pain, emotional states, and pain perception in medical and nursing students: A cross-sectional study
Authors: Romualdo João Miguel , Borges Elisabete , Tavares Isaura , Pozza Daniel H. 
Published: November 2024

Background
Fear of pain is known to influence pain perception and worsen pain outcomes. However, its relationship with pain threshold remains unclear. Negative emotional states, namely depression, anxiety, and stress, have been found to increase fear of pain. Previous pain experiences, both undergone and observed, can also influence fear of pain. Furthermore, healthcare students’ interactions with pain patients may be influenced by fear of pain and pain perception. This study aimed to assess fear of pain among Portuguese medical and nursing students, analyse its association with sex, negative emotional states, previous pain experiences, and curricular year, and evaluate the influence of fear of pain on heat pain threshold.

Methods
A survey based on validated Portuguese questionnaires was carried out. Participants were then invited for quantitative sensory tests to assess heat pain threshold.

Results
Fear of pain was similar for medical and nursing students. Female students presented a higher fear of medical pain. Stress was associated with an increased fear of severe pain. Previous painful experiences, particularly those involving medical procedures, have been found to be variably associated with fear of pain, depending on the type and characteristics of these experiences. No associations were found between fear of pain and curricular year, nor between heat pain threshold and sex or fear of pain.

Conclusions
This study highlights relevant aspects of the emotional and cognitive modulation of fear of pain and pain perception in medical and nursing students. The influence of previous pain experiences on fear of pain is also essential because healthcare students are frequently exposed to painful medical situations during their courses. As altered pain perception can influence their role as future healthcare professionals, the study of fear of pain and its modulators in healthcare students represents an important research field.
The effectiveness of a multi-domain electronic feedback report on the performance of quality indicators for chronic conditions: Protocol for a randomized controlled trial in general practice
Authors: Jäger Levy , Markun Stefan , Grischott Thomas , Senn Oliver , Rosemann Thomas , Burgstaller Jakob M. 
Published: November 2024

Background
Chronic conditions are a significant public health concern due to their rising prevalence, association with high mortality, and substantial healthcare costs. General practitioners play a crucial role in managing these conditions, and quality indicators are essential tools for assessing the quality of care. Electronic feedback reports incorporating quality indicator performance have shown promise in improving care quality. However, most studies have focused on single conditions or link feedback to financial incentives, which may not sustain long-term practice changes. This study aims to evaluate the effectiveness of a multi-condition electronic feedback reports on quality indicator performance in Swiss general practice without financial incentives.

Methods
This randomized controlled trial involves general practitioners enrolled in the FIRE project, a database of electronic medical records from Swiss primary care. Participants are randomized to receive either a plain feedback report or a comprehensive quality indicator -specific feedback report bi-monthly for 12 months. The plain feedback report contains descriptive summaries of practice activities, while the quality indicator-specific feedback report includes performance data on 14 quality indicators across cardiovascular, endocrine, pulmonary, and renal domains. The quality indicators were selected in multi-step process involving review of the literature and clinical guidelines, domain expert consultations, and a panel discussion with general practitioners. The primary study objective is to compare the effectiveness of the quality indicator-specific feedback report and of the plain feedback report with respect to the performance of the selected quality indicators.

Conclusion
The study addresses a critical gap by evaluating a multi-condition feedback report without financial incentives. Its findings can inform future health policies and strategies, in line with national and international initiatives that promote or even require the implementation of quality measurement activities in general practice.

Trial registration
Trial registry: ISRCTN. Registration number: ISRCTN10637092, https://www.isrctn.com/ISRCTN10637092. Registered January 9, 2024.
Older Adults With Celiac Disease Are At Increased Risk of Frailty: A Nationwide Cohort Study
Authors: Zylberberg Haley M. , Lebwohl Benjamin , Söderling Jonas , Kochar Bharati , Jylhävä Juulia , Green Peter H.R. , Ludvigsson Jonas F. 
Published: November 2024

INTRODUCTION:
Celiac disease (CeD) is increasingly diagnosed in older adults, though few studies have explored complications in this group. As frailty confers increased risk for adverse events, we aimed to explore frailty in older adults with CeD.

METHODS:
In a nationwide Swedish cohort, we identified adults ≥60 years with incident CeD between 2004 and 2017 which we matched to population-based controls without CeD by age, sex, county, and calendar-period. Baseline frailty within 3 years before CeD diagnosis or index date was assessed using the Hospital Frailty Risk Score. Among those without baseline frailty, we used conditional logistic regression to estimate odds ratios and 95% confidence intervals of future frailty at 5 years comparing CeD with controls. Logistic regression was used to evaluate the association between persistent villous atrophy vs mucosal healing and frailty in patients with CeD.

RESULTS:
A total of 4,646 older adults with CeD were matched to 21,944 non-CeD individuals. Baseline frailty was increased in patients with CeD (54.4%) compared with controls (29.7%, P < 0.001), which existed across all frailty categories: low-risk (43.4% vs 23.8%), intermediate-risk (10.3% vs 5.4%), and high-risk (0.8% vs 0.6%). Among those without baseline frailty, patients with CeD had a 61% increased risk of overall frailty at 5 years (95% confidence interval 1.46–1.78). Mucosal healing in CeD individuals on follow-up biopsy did not protect against future frailty.

DISCUSSION:
Older adults with CeD were significantly more likely to become frail than matched comparators. This analysis reveals the increased vulnerability that older patients with CeD are likely to experience.
“To Mystify, Terrify, and Enchant”: Queer Nation and the Historiography of Queer Politics
Authors: Hanhardt Christina B. 
Published: November 2024

Abstract
Queer Nation, founded in New York City in 1990, is one of the earliest activist groups to be organized around the term queer. This article provides a history of the founding chapter of Queer Nation and maps the group's political ideals and strategies, highlighting tensions within and outside the organization about race and gender, liberalism, and antiassimilationism, among other issues. In doing so, the article also offers a framework for thinking about antinormativity in the history and historiography of queer politics and theory.
A clinical case of factitious hypoglycemia in a patient with type 1 diabetes mellitus
Authors: Ivanova D. S. , Dzagakhova A. V. , Mikhina M. S. , Ibragimova L. I. , Yukina M. Y. 
Published: November 2024

Artificial hypoglycemia (Munchausen syndrome) is a condition caused by low blood glucose due to the deliberate taking of insulin or oral hypoglycemic drugs. Artificial hypoglycemia remains one of the problems that endocrinologists face in their practice; a diagnostic search for its etiological factor can lead to expensive and unnecessary studies. Diagnosis of artificial hypoglycemia in patients with diabetes mellitus on insulin therapy seems to be a labor-intensive task, since unlike most factitious disorders, which may be indicated by atypical manifestations of the disease or conflicting medical information about the patient, in patients with diabetes mellitus hypoglycemic syndrome is an expected unwanted event due to insulin therapy. Therefore, deliberate insulin administration is often not diagnosed until self-induced hypoglycemia becomes recurrent and/or severe. If artificial hypoglycemia is suspected, a number of authors currently recommend testing С peptide and a combination of two methods for quantitative determination of insulin in the blood using different analyzer systems. Active collaboration between clinical and laboratory specialists is the key to successfully solving such a diagnostic problem.This article presents a clinical case of Munchausen syndrome in a 28-year-old patient with type 1 diabetes mellitus with recurrent hypoglycemia during 21 years, repeated severe hypoglycemia, including loss of consciousness, and proven intentional administration of an insulin analog drug during hospital stay; the complex diagnostic path passed before making the correct diagnosis is described.