bluuebunny/crossref_metadata_2025_split huggingface dataset:
The impact of Inflammatory Bowel Disease related fatigue on Health-Related Quality of Life: a qualitative semi-structured interview study
Authors: Radford Shellie J , Moran Gordon W , Czuber-Dochan Wladyslawa 
Published: July 2022

Background Fatigue is a frequently reported symptom of Inflammatory Bowel Disease (IBD), having a negative impact on Health-Related Quality of Life (HRQoL). Patients’ experiences of this have not been researched in IBD. Methods Semi-structured interviews were conducted with adults with Crohn’s Disease from out-patient clinics in the United Kingdom. Interviews were audio-recorded and transcribed verbatim, then analysed using thematic analysis. Results Fourteen participant interviews were conducted. Three key themes were identified: 1) ‘The new normal’ established through adaptation and acceptance; 2) ‘Energy as a resource’ describing attempts to better manage fatigue through planning and prioritising tasks; 3) ‘Keeping healthy’ encompasses participants’ beliefs that ‘good health’ allows better management of fatigue. Conclusion Participants establish a ‘new’ normality, through maintaining the same or similar level of employment/education activities. However, this is often at the expense of social activities. Further research is required to explore patient led self-management interventions in IBD fatigue.
Exploring pregnant women’s experiences of stopping smoking with an incentive scheme with ‘enhanced’ support: a qualitative study
Authors: McCormack Fiona C , Hopley Rachel C , Boath Elizabeth H , Parry Sian L , Roscoe Suzie M , Stewart Antony , Birch Victoria A 
Published: July 2022

Aim: This study aims to understand pregnant women’s experiences of smoking cessation with an incentive scheme in a deprived UK city. This is important because smoking cessation with pregnant women is one of the most crucial public health initiatives to promote, and is particularly challenging in deprived areas. While financial incentive schemes are controversial, there is a need to better understand pregnant women’s experiences. The scheme combined quasi-financial incentives (shopping vouchers) for validated quits (carbon monoxide (CO) validated at < 10 ppm), enhanced support from smoking cessation advisors, the opportunity to identify a ‘Significant Other Supporter’ and nicotine replacement therapy. Methods: With the focus on understanding pregnant women’s experiences, a qualitative design was adopted. Semi-structured interviews were completed with 12 pregnant women from the scheme, and the three advisors. All interviews were transcribed, and thematic analysis conducted. Results: Pregnant women reported various challenges to quitting, including long-established routines, and stress. Participants were aware of stigma around incentives but were all very positive about the scheme. The relationship with advisors was described as fundamental. The women valued their advice and support, while uptake of the ‘Significant Other Supporter’ appeared low. Participants viewed the CO monitoring as ‘an incentive’, while the vouchers were framed as a ‘bonus’. Advisors perceived the vouchers as helping engage pregnant women and maintain quit status, and women appreciated the vouchers both as financial assistance and recognition of their accomplishments. Conclusion: This study highlights the great value women placed on the support, advice and monitoring from specialist advisors. The distinction between vouchers as a welcomed bonus, rather than ‘the incentive’ to engage, is important. How smoking cessation and schemes to promote this are communicated to pregnant women and health professionals is important, particularly given the stigma and controversy involved.
Glycemic Variability Assessment in Newly Treated Exocrine Pancreatic Insufficiency With Type 1 Diabetes
Authors: Lewis Dana M. , Shahid Arsalan 
Published: July 2022

Background: Thirty-nine percent of people with type 1 diabetes may have lowered pancreatic elastase levels, correlated with exocrine pancreatic insufficiency (EPI or PEI). EPI is treated with oral supplementation of pancreatic enzymes. Little is known about the glycemic impact of pancreatic enzyme replacement therapy (PERT) in people with diabetes. This article demonstrates a method of assessing glycemic variability (GV), glycemic outcomes, and other changes in an individual with type 1 diabetes using open-source automated insulin delivery (AID). Method: Macronutrient, PERT intake, and EPI-related symptoms were self-tracked; diabetes data were collected automatically via an open-source AID system. Diabetes data were uploaded via Nightscout to Open Humans and downloaded for analysis alongside self-tracked data (food, PERT). Glycemic outcomes, macronutrients, PERT dosing, and a variety of GV metrics following meals were evaluated for one month before and one month after PERT commencement. Breakfast was assessed independently across both time periods. Results: In an n = 1 individual using an open-source AID, time in range was already above goal and improved further after PERT commencement. Glucose rate of change and excursions >180 mg/dL were reduced; mean high blood glucose index was reduced overall and more so specifically at breakfast following PERT commencement. Conclusions: GV can aid in assessing response to new-onset medications, as was demonstrated in this article for n = 1 individual with type 1 diabetes (using an open-source AID) after commencing PERT for newly identified EPI. GV may be useful for evaluating the efficacy of new-onset medications for people with insulin-requiring diabetes.
A rare case of metastatic atypical meningioma that highlights the shortcomings of treatment options at present
Authors: Wrange Erik Kristian Maurice , Harders Stefan Markus Walbom 
Published: July 2022

We report a case of a locally invasive recurrent atypical meningioma in the temporal region with late onset of meningioma lung metastasis. The patient was diagnosed in early adolescence with an atypical meningioma believed to be radiotherapy induced following treatment of a benign pilocytic astrocytoma in the hypothalamus region at 6 years of age. Even though the patient underwent several surgical and radiotherapy treatments, the intracranial meningioma kept growing and was locally invasive. The patient received experimental treatment with bevacizumab, a vascular endothelial growth factor A (VEGF-A)-inhibitor, for 4 years from age 26. Treatment was withdrawn after proven tumor growth on routine control MRI. A DOTA-TOC PET-CT-scan was performed to evaluate the DOTA-TOC somatostatin receptor number for possible SSTR (somatostatin receptor targeted therapy). In the included scan plan multiple lung metastasis were detected and later verified. Genomic tumor sequencing was performed, but no targeted treatment options were found. Instead, the patient finally, as the last treatment option, underwent 4 series of SSTR-targeted therapy (Lutetium DOTA-TOC). Unfortunately, the intracranial tumor component significantly progressed during the final stages of the treatment and the patient died less than a year after treatment was withdrawn at age 32. This case story illustrates the shortcomings of atypical/anaplastic meningioma treatment strategies at present and highlights the possibility of extracranial metastasis.
Human complete NFAT1 deficiency causes a triad of joint contractures, osteochondromas, and B-cell malignancy
Authors: Sharma Mehul , Fu Maggie P. , Lu Henry Y. , Sharma Ashish A. , Modi Bhavi P. , Michalski Christina , Lin Susan , Dalmann Joshua , Salman Areesha , Del Bel Kate L. , Waqas Meriam , Terry Jefferson , Setiadi Audi , Lavoie Pascal M. , Wasserman Wyeth W. , Mwenifumbo Jill , Kobor Michael S. , Lee Anna F. , Kuchenbauer Florian , Lehman Anna , Cheng Sylvia , Cooper Anthony , Patel Millan S. , Turvey Stuart E. 
Published: July 2022

Abstract
The discovery of humans with monogenic disorders has a rich history of generating new insights into biology. Here we report the first human identified with complete deficiency of nuclear factor of activated T cells 1 (NFAT1). NFAT1, encoded by NFATC2, mediates calcium-calcineurin signals that drive cell activation, proliferation, and survival. The patient is homozygous for a damaging germline NFATC2 variant (c.2023_2026delTACC; p.Tyr675Thrfs∗18) and presented with joint contractures, osteochondromas, and recurrent B-cell lymphoma. Absence of NFAT1 protein in chondrocytes caused enrichment in prosurvival and inflammatory genes. Systematic single-cell–omic analyses in PBMCs revealed an environment that promotes lymphomagenesis with accumulation of naïve B cells (enriched for oncogenic signatures MYC and JAK1), exhausted CD4+ T cells, impaired T follicular helper cells, and aberrant CD8+ T cells. This work highlights the pleiotropic role of human NFAT1, will empower the diagnosis of additional patients with NFAT1 deficiency, and further defines the detrimental effects associated with long-term use of calcineurin inhibitors.
Behçet’s disease presenting as neuroretinitis with pre-papillary vitreous infiltrate: a case report
Authors: Mahjoub Ahmed , Abdesslem Nadia Ben , Sellem Ilhem , Zaafrane Nesrine , Mahjoub Anis , Sakji Fatma , Ghorbel Mohamed , Mahjoub Hachemi , Yahia Wissal Ben , Guiga Ahmad 
Published: July 2022

Abstract
Objective
To report a case of Behçet’s disease (BD) presenting as a panuveitis with neuroretinitis and pre-papillary vitreous infiltrate.

Material and methods
A case report.

Results
A 43-year-old male presented with severely decreased vision in the left eye. Ophthalmological examination revealed unilateral non granulomatous panuveitis with occlusive retinal vasculitis, neuroretinitis and pre-papillary vitreous infiltrate. Initial swept source OCT revealed a “funnel-shaped” hyperreflective lesion overlying the optic disc corresponding to the pre-papillary vitreous infiltrate associated with optic disc edema and a serous retinal detachment extending to the macula. Examination by an internal medicine specialist revealed buccal aphthous ulcer and pseudofolliculitis lesions. BD diagnosis was made and the patient received corticosteroid and immunosuppressive therapy. The pre-papillary vitreous infiltrate resolution under treatment was documented with repeat swept source OCT.

Conclusion
Pre-papillary vitreous infiltrate has been rarely reported in the literature. This finding is a typical feature in severe cases of BD uveitis and is usually associated with a neuroretinitis. Optic disc OCT is useful to make the diagnosis and to monitor the resolution of the pre-papillary vitreous infiltrate.
Effectiveness and cost-effectiveness of an intervention to improve Initial Medication Adherence to treatments for cardiovascular diseases and diabetes in primary care: study protocol for a pragmatic cluster randomised controlled trial and economic model (the IMA-cRCT study)
Authors: Sánchez-Viñas Alba , Corral-Partearroyo Carmen , Gil-Girbau Montserrat , Peñarrubia-María M. Teresa , Gallardo-González Carmen , Olmos-Palenzuela María-del-Carmen , Aznar-Lou Ignacio , Serrano-Blanco Antoni , Rubio-Valera Maria 
Published: July 2022

Abstract
Background
Between 2 and 43% of patients who receive a new prescription in PC do not initiate their treatments. Non-initiation is associated with poorer clinical outcomes, more sick leave and higher costs to the healthcare system. Existing evidence suggests that shared decision-making positively impacts medication initiation. The IMA-cRCT assesses the effectiveness of the IMA intervention in improving adherence and clinical parameters compared to usual care in patients with a new treatment for cardiovascular disease and diabetes prescribed in PC, and its cost-effectiveness, through a cRCT and economic modelling.

Methods
The IMA intervention is a shared decision-making intervention based on the Theoretical Model of Non-initiation. A cRCT will be conducted in 24 PC teams in Catalonia (Spain), randomly assigned to the intervention group (1:1), and community pharmacies in the catchment areas of the intervention PC teams. Healthcare professionals in the intervention group will apply the intervention to all patients who receive a new prescription for cardiovascular disease or diabetes treatment (no other prescription from the same pharmacological group in the previous 6 months). All the study variables will be collected from real-world databases for the 12 months before and after receiving a new prescription. Effectiveness analyses will assess impact on initiation, secondary adherence, cardiovascular risk, clinical parameters and cardiovascular events. Cost-effectiveness analyses will be conducted as part of the cRCT from a healthcare and societal perspective in terms of extra cost per cardiovascular risk reduction and improved adherence; all analyses will be clustered. Economic models will be built to assess the long-term cost-effectiveness of the IMA intervention, in terms of extra cost for gains in QALY and life expectancy, using clinical trial data and data from previous studies.

Discussion
The IMA-cRCT represents an innovative approach to the design and evaluation of behavioural interventions that use the principles of complex interventions, pragmatic trials and implementation research. This study will provide evidence on the IMA intervention and on a new methodology for developing and evaluating complex interventions. The results of the study will be disseminated among stakeholders to facilitate its transferability to clinical practice.

Trial registration
ClinicalTrials.gov, NCT05026775. Registered 30th August 2021.
Characterisation of Staphylococci species from neonatal blood cultures in low- and middle-income countries
Authors: Sands Kirsty , Carvalho Maria J. , Spiller Owen B. , Portal Edward A. R. , Thomson Kathryn , Watkins William John , Mathias Jordan , Dyer Calie , Akpulu Chinenye , Andrews Robert , Ferreira Ana , Hender Thomas , Milton Rebecca , Nieto Maria , Zahra Rabaab , Shirazi Haider , Muhammad Adil , Akif Shermeen , Jan Muhammad Hilal , Iregbu Kenneth , Modibbo Fatima , Uwaezuoke Stella , Chan Grace J. , Bekele Delayehu , Solomon Semaria , Basu Sulagna , Nandy Ranjan Kumar , Naha Sharmi , Mazarati Jean-Baptiste , Rucogoza Aniceth , Gaju Lucie , Mehtar Shaheen , Bulabula Andre N. H. , Whitelaw Andrew ,   BARNARDS Group, Walsh Timothy R. 
Published: July 2022

AbstractBackgroundIn low- and middle-income countries (LMIC)Staphylococcus aureusis regarded as one of the leading bacterial causes of neonatal sepsis, however there is limited knowledge on the species diversity and antimicrobial resistance caused by Gram-positive bacteria (GPB).MethodsWe characterised GPB isolates from neonatal blood cultures from LMICs in Africa (Ethiopia, Nigeria, Rwanda, and South Africa) and South-Asia (Bangladesh and Pakistan) between 2015–2017. We determined minimum inhibitory concentrations and performed whole genome sequencing (WGS) on Staphylococci isolates recovered and clinical data collected related to the onset of sepsis and the outcome of the neonate up to 60 days of age.ResultsFrom the isolates recovered from blood cultures, Staphylococci species were most frequently identified. Out of 100S. aureusisolates sequenced, 18 different sequence types (ST) were found which unveiled two small epidemiological clusters caused by methicillin resistantS. aureus(MRSA) in Pakistan (ST8) and South Africa (ST5),both with high mortality (n = 6/17). One-third ofS. aureuswas MRSA, with methicillin resistance also detected inStaphylococcus epidermidis, Staphylococcus haemolyticusandMammaliicoccus sciuri.Through additional WGS analysis we report a cluster ofM. sciuriin Pakistan identified between July-November 2017.ConclusionsIn total we identified 14 different GPB bacterial species, however Staphylococci was dominant. These findings highlight the need of a prospective genomic epidemiology study to comprehensively assess the true burden of GPB neonatal sepsis focusing specifically on mechanisms of resistance and virulence across species and in relation to neonatal outcome.
Iatrogenic genito-urinary fistula following cesarean birth in nine sub-Saharan African countries: a retrospective review
Authors: Ngongo Carrie J. , Raassen Thomas J. I. P. , Mahendeka Marietta , Lombard Ladeisha , van Roosmalen Jos 
Published: July 2022

Abstract
Background
Genito-urinary fistulas may occur as complications of obstetric surgery. Location and circumstances can indicate iatrogenic origin as opposed to pressure necrosis following prolonged, obstructed labor.

Methods
This retrospective review focuses on 787 women with iatrogenic genito-urinary fistulas among 2942 women who developed fistulas after cesarean birth between 1994 and 2017. They are a subset of 5469 women who sought obstetric fistula repair between 1994 and 2017 in Tanzania, Uganda, Kenya, Malawi, Rwanda, Somalia, South Sudan, Zambia, and Ethiopia. We compared genito-urinary fistula classifications following vaginal birth to classifications following cesarean birth. We assessed whether and how the proportion of iatrogenic genito-urinary fistula was changing over time among women with fistula, comparing women with iatrogenic fistulas to women with fistulas attributable to pressure necrosis. We used mixed effects logistic regression to model the rise in iatrogenic fistula among births resulting in fistula and specifically among cesarean births resulting in fistula.

Results
Over one-quarter of women with fistula following cesarean birth (26.8%, 787/2942) had an injury caused by surgery rather than pressure necrosis due to prolonged, obstructed labor. Controlling for age, parity, and previous abdominal surgery, the odds of iatrogenic origin nearly doubled over time among all births resulting in fistula (aOR 1.94; 95% CI 1.48–2.54) and rose by 37% among cesarean births resulting in fistula (aOR 1.37; 95% CI 1.02–1.83). In Kenya and Rwanda the rise of iatrogenic injury outpaced the increasing frequency of cesarean birth.

Conclusions
Despite the strong association between obstetric fistula and prolonged, obstructed labor, more than a quarter of women with fistula after cesarean birth had injuries due to surgical complications rather than pressure necrosis. Risks of iatrogenic fistula during cesarean birth reinforce the importance of appropriate labor management and cesarean decision-making. Rising numbers of iatrogenic fistulas signal a quality crisis in emergency obstetric care. Unaddressed, the impact of this problem will grow as cesarean births become more common.
One-stage tubularized urethroplasty using the free inner plate of the foreskin in the treatment of proximal hypospadias
Authors: Shi Tong , Lin Yan-Kun , Bao Qiao , Lao Wei-Hua , Ouyang Ke-Yu 
Published: July 2022

Abstract
Objective
This study summarizes the short-term efficacy of the one-stage tubularized urethroplasty using the free inner in proximal hypospadias.

Methods
A retrospective analysis was conducted on 42 patients with proximal hypospadias. All cases were treated with one-stage tubularized urethroplasty from January 2020 to June 2021. The postoperative complications like urethral fistula, urethral stricture, diverticulum, and split penis head were recorded.

Results
Patients were followed up for 3 to 15 months (an average of 8.5 months). A total of 26 cases (62%) were repaired without any complication. Five patients (11.9%) developed urinary fistulas and underwent secondary repair: three cases with anastomotic fistulas and two cases of coronal fistulas. Nine patients (21.4%) had stenosis of the head segment of the penis, six (14.3%) had stenosis that was relieved by urethral dilatation combined with topical mometasone furoate 1 month after urethral catheter removal. Two patients (4.8%) had severe stenosis with secondary surgical stenosis incision, and one (2.4%) had combined urethral diverticulum in which urethral stenosis incision and diverticulectomy were performed.

Conclusions
Tubularized urethroplasty using the free inner bears the advantages of easy access, reduced short-term complications, low incidence of diverticula.
COVID-19 vaccine hesitancy and patient self-advocacy: a statistical analysis of those who can and can’t get vaccinated
Authors: Ashwell Douglas , Cullinane Joanna , Croucher Stephen M. 
Published: July 2022

Abstract
Background
This study applies the Patient Self-Advocacy scale to investigate vaccine hesitancy in New Zealand. Due to New Zealand’s very limited tertiary hospital system and vulnerable populations, the Government’s strategy to address COVID-19 has been to prevent the virus from entering the nation and to eliminate it when it does cross the border. Therefore, there is no opportunity for the nation to generate any acquired immunity through exposure. To transition from closed borders, New Zealand will need to run a highly successful national vaccination programme and this needs to have the ability to drive influential public health messaging to the targeted places within the communities where vaccine hesitancy most exists.

Methods
This study employed statistical methods. A nationally representative survey of adults in New Zealand (n = 1852) was collected via Qualtrics. Independent samples t-tests, and multiple regression were used to explore the research questions.

Results
Those who identify as medically able to be vaccinated expressed significantly higher confidence in the COVID-19 vaccine than those who identified as unable to be vaccinated. Patient-self advocacy had a positive effect on vaccine confidence. Individuals who identify as able to be vaccinated have less hesitancy. Demographics had various effects on vaccine hesitancy.

Conclusion
The research highlights particularly important insights into vaccine hesitancy related to patient self-advocacy behaviours, and various demographic variables such as political affiliation. In addition, the research adds further clarity on how and why New Zealanders have responded to the COVID-vaccine. Finally, the importance of vaccine literacy is discussed.