bluuebunny/crossref_metadata_2025_split huggingface dataset:
A cycle of invisibilisation: a qualitative study of Brazilian health system factors shaping access to long COVID care
Authors: Aveling Emma-Louise , Caldas Bárbara , Sabaine Brenda , Portela Margareth Crisóstomo , Soares Letícia , Cornish Flora 
Published: December 2024

IntroductionLong COVID (LC), an often-debilitating infection-associated chronic condition (IACC), affects millions of people globally. Globally, LC patients struggle to access timely, appropriate care, often experiencing disbelief, misunderstandings or being diverted from healthcare. Few studies have examined health system factors influencing LC healthcare access, especially in the Global South. Drawing on the concept of candidacy, we examine health system factors influencing access to LC care in Brazil’s public healthcare system (Sistema Único de Saúde, SUS) and theorise implications for equitable access to public healthcare for IACCs globally.MethodsWe conducted a patient-engaged, qualitative study in the city of Rio de Janeiro. 29 individual semi-structured interviews were conducted with SUS professionals from administrative leaders to multidisciplinary primary and specialist care staff (November 2022 to July 2023). Verbatim transcripts were analysed using a pragmatic thematic analysis.ResultsLC patients’ candidacy for care is invisibilised within SUS through multiple, interacting processes. Interplay of an over-burdened health system, prioritisation of resources in response to (flawed) evidence of demand, misalignment of LC patient capacities and demands of navigating fragmented services, complex referral processes, professionals’ lack of LC knowledge and disregard of the severity and morbidity of a chronic condition amid acute demands, led to the under-recognition of LC by healthcare professionals. Professionals’ under-recognition perpetuates administrators’ de-prioritisiation of resources, policies and training necessary to ensure access to appropriate care, creating a cycle of invisibilisation.ConclusionUrgent action to disrupt a cycle of invisibilisation is essential to mitigate patients’ suffering and intensification of inequalities. Disrupting this pernicious cycle requires more than narrow clinical education efforts. Improved surveillance, education, patient involvement, attention to moral injury and building on existing multidisciplinary strengths may enhance access to LC care. Doing so offers wider benefits beyond patients with LC. We call for a paradigm shift in clinical approaches to IACCs.
Factors influencing adherence to home based pulmonary rehabilitation programme by high risk patients awaiting lung surgery: mixed methods study
Authors: Yang Xiaoyi , Tang Wenfeng , Xu Lian , Chen Ailian , Zeng Fanshu 
Published: December 2024

ObjectivePreoperative home based pulmonary rehabilitation (HPR) can reduce postoperative complications in lung surgery patients. This study aimed to investigate the level of adherence to a preoperative HPR programme in high risk patients awaiting lung surgery, and factors influencing adherence.DesignA mixed methods explanatory sequential design consisting of a quantitative questionnaire survey and a qualitative interview study.SettingThe study was conducted at a tertiary hospital in Chongqing, China.Participants186 high risk patients awaiting lung surgery were enrolled in the preoperative HPR programme. All 186 patients participated in the quantitative questionnaire survey. 13 of the 186 patients were selected to participate in the qualitative interview study.ResultsQuantitative questionnaire results revealed an adherence rate of 52.3%. Marital status, residence location, exercise habit, smoking index and pulmonary function were identified as independent influencers of adherence (p<0.05). Qualitative interviews identified poor health, lack of family and social support, adverse weather condition, arduous preoperative examination and unfit exercise intensity as barriers to adherence, and perceived health benefits, family support, and flexibility and convenience in exercise time and space as factors encouraging adherence.ConclusionsHigh risk patients awaiting lung surgery adhered to preoperative HPR at a moderate level. A tiered approach can be used to develop personalised HPR protocols based on patients’ individual needs and situations to improve adherence and maximise the benefits of HPR.
Influences on safety of intrapartum electronic fetal heart rate monitoring practices: a scoping review
Authors: Kelly Sarah , Lamé Guillaume , Dixon-Woods Mary , Liberati Elisa , Kyriacou Harry , Dunn Harry , Egerton Alice , Kok Zi Qi , Jones Kathryn , Zheng Xueying Nancy , Kuhn Isla , Draycott Tim J , Winter Cathy , Burt Jenni 
Published: December 2024

ObjectivesSuboptimal intrapartum electronic fetal heart rate monitoring using cardiotocography has remained a persistent problem (EFM-CTG). We aimed to identify the range of influences on the safety of using EFM-CTG in practice.DesignScoping review to identify influences related to the practice of intrapartum EFM.Data sourcesMEDLINE, Embase, CINAHL, Web of Science, Scopus, British Nursing Index, Cochrane Library, from 1 January 2001 to 25 August 2024, and grey literature.Eligibility criteriaArticles that reported potential influences on the clinical practice of intrapartum EFM-CTG in hospital-based intrapartum maternity care settings, including primary studies, secondary analyses, reviews, reports, conference abstracts and investigations relevant to maternity and obstetrics, in English. Evaluations of technological modifications to traditional EFM-CTG monitoring and analysis were excluded.Data extraction and synthesisWe extracted influences on EFM-CTG from the included studies. Findings were synthesised using a best-fit framework approach, structured using an existing 19-domain framework of contributory factors for patient safety incidents in hospitals.Results142 articles and 14 reports were included. Our synthesis identified influences on EFM practice across all 19 domains of the contributory factors framework, including those relating to cognitive, social and organisational factors and interactions between professional work and tools used for fetal monitoring.ConclusionReducing avoidable harm associated with electronic fetal monitoring requires a systems approach based on a sound understanding of the full range of influences on practice.
Which clinical trial designs and statistical approaches have been used in assessments of orphan maintenance by the European Medicines Agency between 2012 and 2022? A cross-sectional study.
Authors: Windfuhr Fabian , Larsson Kristina , Framke Theodor , Lasch Florian 
Published: December 2024

ObjectivesIn the European Union, a new orphan medicinal product must demonstrate ‘significant benefit’ over approved medicinal products targeting the same indication. To demonstrate a significant benefit, comparisons between the new product and the already approved medicinal products—either directly by a head-to-head comparison within a clinical trial or indirectly as a cross-trial comparison—are necessary. In this study, we investigate the types of trial designs and statistical approaches used for demonstrating a significant benefit of a new orphan medicinal product against approved comparators used between 2012 and 2022.DesignThis is a cross-sectional study based on the European Medicines Agency's ‘orphan maintenance’ assessment documents between 2012 and 2022. All documents were manually reviewed to extract structured data on the following outcome measures:For every comparison between a new orphan medicinal product and a comparator used for demonstrating a significant benefit as part of an orphan maintenance procedure, we recorded the type and design of the data source and the type of statistical methodology used for the comparison.ResultsWe identified 151 EMA orphan maintenance procedures with a positive decision that required the demonstration of a significant benefit. Within these 151 procedures, 418 comparisons between medicinal products were identified. Indirect comparisons are the most common approach for comparing the new orphan medicinal product to a relevant comparator (44%, 182/418), followed by qualitative comparisons (39%, 162/418) and direct comparisons (18%, 74/418). Among the indirect comparisons, naive side-by-side comparisons are most often used (71%, 129/182), whereas inferential approaches that adjust for population differences and quantify the uncertainty of the comparison are used less often (29%, 53/182). Although there is no clear time trend in the prevalence of any specific comparison type, we find that inferential indirect comparison methods approximately doubled between the first and second half of the reviewed time frame.ConclusionsIndirect comparisons play an important role in demonstrating a significant benefit in the assessment of orphan products. Further work is needed to evaluate the appropriateness of different methodologies.
Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology
Authors: Habetswallner Francesco , Iorio Raffaele , Annicchiarico Giuseppina , Limongelli Giuseppe , Uccheddu Maria Bonaria , Galeone Carlotta , Mariani Paolo , Mantegazza Renato 
Published: December 2024

ObjectivesTo provide comprehensive information on the burden of myasthenia gravis (MG) in Italy, including the unmet needs of patients and several other aspects related to the disease, based on skilled viewpoints of MG experts.DesignIterative analysis conducted in accordance with the best practices of the Delphi method, including anonymity, controlled feedback, and statistical stability of consensus.Setting and participants24 clinicians, 18 public health experts and 4 patient associations experts completed all the Delphi iterations between 18 April and 3 July 2023, for a total of 46 participants from several Italian Regions.Outcome measuresFive areas of investigation related to MG were examined: epidemiology in Italy and characteristics of disease; diagnostic issues and Italian patient journey; unmet needs during the acute and chronic phases of MG; quality of life; public health management of MG. Consensus in the Delphi iterations was defined by both the percentage level of agreement between panellists or the median value of the responses.ResultsWe reported a high level of agreement (ie, >66.7% of panellists) on the prevalence and incidence of disease in Italy and on several management issues. A strong impact of MG on the quality of life of patients also emerged. Cross-agreement was achieved among different subgroups of panellists (ie, clinicians, public health experts and patient associations representatives) for most items proposed.ConclusionsThis study provided guidance for educational and practical aspects of MG in Italy, highlighted disease severity and its role on patients’ quality of life. A few gaps related to the handling of MG in Italy also emerged.
Protocol to assess bottlenecks inhibiting the scaling up of evidence-based family planning practices in low-income and middle-income countries using mixed methods
Authors: Kabra Rita , Church Kathryn , Allagh Komal Preet , Saad Abdulmumin , Ali Moazzam , Steyn Petrus , Kiarie James 
Published: December 2024

IntroductionScaling up evidence-based practices (EBPs) in family planning (FP), as recommended by the WHO, has increasingly been accepted by global health actors as core to their mission, goals and activities. National policies, strategies, guidance, training materials, political commitment and donor support exist in many countries to adopt and scale up a range of EBPs, including postpregnancy FP, task sharing for FP and the promotion of social and behaviour change (SBC) for FP. While there has been some success in implementing these practices, coverage remains inadequate in many countries. To gain a better understanding of the factors that may be hindering the sustained scale-up of these interventions, WHO has developed an assessment protocol to systematically identify the health systems’ ‘bottlenecks’ to implementation and to then identify solutions and develop strategies to address them.Methods and analysisA mixed method approach that includes document review, secondary data analysis (from surveys, service delivery data and case studies) and key informant interviews with policymakers, programme managers, health providers and community groups will be used to identify bottlenecks. This will be followed by a workshop to prioritise bottlenecks and characterise their root causes. Finally, solutions for the root causes of prioritised bottlenecks will be proposed. The protocol is structured in a modular format, with separate modules on postpregnancy FP, task sharing and SBC. Assessment themes and questions are informed by a wide body of literature on the three programmatic components, as well as studies on health policy implementation and scale-up.Ethics and disseminationThe protocol was exempt from ethical review by the WHO ethics committee. The findings of the bottleneck analysis will be presented at local, national and international conferences and disseminated through peer-reviewed publications and webinars.
Is it feasible to treat polycystic ovarian syndrome with or without insulin resistance using glucokinase activators as novel hypoglycaemic medications? A protocol for a systematic review and meta-analysis
Authors: Zeng Genping , Lu Xijing , Li Peiyin , Zeng Tan , Lin Zitong , Miao Yuxi , Yuan Shuo , Liu Xiaojing , Zeng Lei 
Published: December 2024

IntroductionA variety of hypoglycaemic drugs are used to treat polycystic ovarian syndrome (PCOS), but their efficacy remains insufficient. Glucokinase activators (GKAs) are a unique class of hypoglycaemic medications with emerging potential, notably in significantly reducing insulin resistance (IR). Nevertheless, the efficacy of GKAs in treating PCOS, particularly in the absence or presence of IR, remains uncertain. The meta-analysis protocol aims to address this knowledge gap, furnish evidence-based data to support potential revisions in PCOS treatment guidelines and promote the utilisation of GKAs in clinical settings.Methods and analysisA comprehensive search will be conducted across the Cochrane Central Register of Controlled Trials, PubMed, Web of Science, Embase, Medline, Scopus, CNKI, Wanfang and VIP databases to identify randomised controlled trials investigating the use of GKAs in the treatment of PCOS, irrespective of the presence of IR. The search will encompass all available studies without language restrictions and cover the period from the inception of each database to 10 April 2024. Disputes will be resolved by talking with a third expert following the screening of articles and data extraction by two reviewers. The primary outcomes of interest encompass changes in anthropometric parameters, menstrual frequency, sex hormone levels, and glucose metabolism, while secondary objectives include lipid metabolism and adverse events. The methodological quality of each study will be assessed using Version 2 of the Cochrane Collaboration tool for assessing Risk of Bias (RoB 2.0), and the Grade of Recommendations, Assessment, Development and Evaluation (GRADE) technique will be used to assess the quality of evidence and degree of recommendation. The study duration of this study will be from 5 April 2024 to 10 April 2025.Ethics and disseminationSince this study just analyses data that are readily available to the public and does not directly involve patient participation, ethical approval is not necessary. The findings will be made public by being published in a medical journal that is subject to peer review.PROSPERO registration numberCRD42024535633.
Exploring aspects of mentoring for black and minoritised healthcare professionals in the UK: a nominal group technique study
Authors: Sriram Vimal , Atwal Anita , McKay Elizabeth A 
Published: December 2024

ObjectiveMentoring plays a crucial role in career development, particularly for black and minoritised ethnic (BME) professionals. However, existing literature lacks clarity on the impact of mentoring and how best to deliver for career success. This study aimed to ascertain perceptions and build consensus on what is important in mentoring for BME healthcare professionals.DesignNominal group technique: The participants in the group followed a structured stepwise process of introduction, silent idea generation, each participant presenting ideas in turn, open discussion and priority voting based on common themes generated during the discussion. This was followed by the creation of a model covering the important aspects of mentoring for BME healthcare professionals.SettingUK.ParticipantsA nominal group technique workshop with 12 participants briefed on this technique.ResultsThere was strong agreement about the most highly rated attributes. Participants emphasised the significance of psychosocial mentoring, highlighting trust, intimacy and clear communication of expectations between mentor and mentee. Discussions on race and racism in mentoring were considered essential. Mentoring circles were proposed as complementary to one-to-one mentoring, offering peer support. Participants stressed the importance of allies in the mentoring process, highlighting the need for authenticity, humility and courage in challenging established norms.ConclusionThis study helped create a mentoring model tailored to the needs of BME health and care professionals. This model highlights the importance of sponsorship, allyship, surface characteristics and peer support in fostering career progression for BME mentees. Key elements include mentor honesty, humility and awareness of bias and race issues, alongside skills for effective mentoring relationships. This model provides a mechanism for supporting and mentoring BME workers in healthcare for career advancement.
What are the general public’s expectations about the likely duration of common acute infections? A cross-sectional survey of Australian residents
Authors: Boaitey Kwame Peprah , Bakhit Mina , Jones Mark , Hoffmann Tammy 
Published: December 2024

ObjectivesTo explore the general public’s expectations about the likely duration of acute infections that are commonly managed in primary care and if care is sought for these infections, reasons for doing so.DesignA cross-sectional online survey.ParticipantsA nationwide sample of 589 Australian residents, ≥18 years old with representative quotas for age and gender, recruited via an online panel provider.Outcome measuresFor eight acute infections, participants’ estimated duration of each, time until they would seek care, and reasons for seeking care.ResultsFor four infections, participants’ mean estimates of duration were within an evidence-based range—common cold (7.2 days), sore throat (5.2 days), acute otitis media (6.2 days) and impetigo (8.3 days); and >70% of the participants estimated a duration within the range. However, participants’ estimated mean duration was shorter than evidence-based estimates for acute cough (7.6 days), sinusitis (5.6 days), conjunctivitis (5.7 days) and uncomplicated urinary tract infections (UTIs; 5.4 days); and >60% of the participants underestimated the duration. Of the 589 participants, 365 (62%) indicated they were unlikely to routinely seek care for self-limiting infections. Most common reasons for care-seeking were severe or worsening symptoms, a desire for quick recovery and fear of progression to complications. After being shown typical durations, the proportion of participants who reported having no concerns waiting for spontaneous resolution while managing symptoms with over-the-counter medications ranged across the infections and was highest for common cold (68%) and lowest for UTI (31%).ConclusionParticipants underestimated the duration of some infections compared with evidence-based estimates and were accurate in their estimates for other infections. Many stated that they would not be concerned about waiting for illnesses to self-resolve after learning the typical duration. Communicating the expected duration of common acute infections during routine consultations can help manage patients’ expectations of recovery and need to seek care.
Evaluating the CURB-65 score for in-hospital mortality prediction in COVID-19 patients: insights into dysglycaemia
Authors: Mohamed Farzahna , Prim Brent A , Zamparini Jarrod , Millen Aletta , Raal Frederick , Kalla Ismail Sikander 
Published: December 2024

IntroductionWhile the CURB-65 score predicts mortality in community-acquired pneumonia (CAP), its performance in COVID-19 CAP is suboptimal. Hyperglycaemia correlates with an increased mortality in COVID-19. This analysis aims to enhance predictive accuracy for in-hospital mortality among COVID-19 patients by augmenting the CURB-65 score with objective variables, including markers of dysglycaemia.DesignA single-centre retrospective observational analysis assessed the effectiveness of the CURB-65 score in predicting in-hospital mortality among adult patients with moderate to severe COVID-19 from March to September 2020. Using a binary logistic regression model, two extended CURB-65 scores which include markers of dysglycemia are proposed to enhance the predictive capability of the CURB-65 score for in-hospital mortality.ResultsAmong 517 patients admitted, 117 (22.6%) died. Using the CURB-65 score, 393 patients (76%) were classified as low risk, 91 (17.6%) as medium risk and 33 (6.4%) as high risk. 37 patients were diagnosed with new-onset dysglycaemia, of which 22 (59.5%) died (p<0.001). Of those with dysglycaemia who died, 41% and 23% were classified as low risk and high risk using the CURB-65 score. The CURB-65 score demonstrated a modest area under the receiver operator characteristic curve (AUC) of 0.75 (95% CI 0.70 to 0.81) for in-hospital mortality in COVID-19 CAP. An Extended CURB-65 Score 1, incorporating an admission of fasting plasma glucose (FPG) and neutrophil to lymphocyte ratio, showed improved prognostic performance with an AUC of 0.80 (95% CI 0.76 to 0.85). When lactate and lactate dehydrogenase were added to these parameters (Extended CURB-65 Score 2), the AUC was 0.82 (95% CI 0.78 to 0.86). The integrated discrimination index showed an 11% and 24% higher discrimination slope when using the Extended CURB-65 Scores 1 and 2, respectively.ConclusionsThe addition of common biochemical parameters including an admission FPG enhances the prognostic performance of CURB-65 for in-hospital mortality among patients with COVID-19.