bluuebunny/crossref_metadata_2025_split huggingface dataset:
Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review
Authors: Kim Boah , Wister Andrew , O’dea Eireann , Mitchell Barbara A , Li Lun , Kadowaki Laura 
Published: December 2023

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their complex needs. It is critical to understand their experiences and perspectives while navigating these systems. This review aimed to identify and organise the research findings on the roles and experiences of informal caregivers of older adults while navigating community and healthcare systems.DesignThis scoping review was undertaken according to the Joanna Briggs Institute’s Reviewer manual. Four databases were used: AgeLine, PsycINFO, CINAHL and Medline to capture literature with a focus on informal caregivers whose care recipients are aged 55 years or older. Articles were included if they focused on examining the experience, perspective and/or role of informal caregivers in providing care for their older care recipients, while articles were excluded if they only focused on healthcare professionals or older adults.ResultsA total of 24 studies were identified that met the study inclusion criteria. This review elucidated the roles of caregivers as a primary system navigator and as an advocate for older adults. Numerous challenges/barriers in system navigation were uncovered, such as lack of consistency in fragmented systems, as well as facilitators, including interface/coordination roles. Finally, recommendations for better system navigation such as caregiver engagement and integration of continuity of care services were identified.ConclusionThe need to raise the visibility of the roles and experiences of informal caregivers in system navigation was highlighted. Further research needs to focus on implementing interventions for informal caregivers incorporating a care coordinator to fill the care gap within community and healthcare systems. This review has the potential to foster greater integration of community and healthcare systems.
Protocol for the Tallaght University Hospital Institute for Memory and Cognition-Biobank for Research in Ageing and Neurodegeneration
Authors: Dyer Adam H , Dolphin Helena , O’Connor Antoinette , Morrison Laura , Sedgwick Gavin , McFeely Aoife , Killeen Emily , Gallagher Conal , Davey Naomi , Connolly Eimear , Lyons Shane , Young Conor , Gaffney Christine , Ennis Ruth , McHale Cathy , Joseph Jasmine , Knight Graham , Kelly Emmet , O’Farrelly Cliona , Bourke Nollaig M , Fallon Aoife , O’Dowd Sean , Kennelly Sean P 
Published: December 2023

IntroductionAlzheimer’s disease and other dementias affect >50 million individuals globally and are characterised by broad clinical and biological heterogeneity. Cohort and biobank studies have played a critical role in advancing the understanding of disease pathophysiology and in identifying novel diagnostic and treatment approaches. However, further discovery and validation cohorts are required to clarify the real-world utility of new biomarkers, facilitate research into the development of novel therapies and advance our understanding of the clinical heterogeneity and pathobiology of neurodegenerative diseases.Methods and analysisThe Tallaght University Hospital Institute for Memory and Cognition Biobank for Research in Ageing and Neurodegeneration (TIMC-BRAiN) will recruit 1000 individuals over 5 years. Participants, who are undergoing diagnostic workup in the TIMC Memory Assessment and Support Service (TIMC-MASS), will opt to donate clinical data and biological samples to a biobank. All participants will complete a detailed clinical, neuropsychological and dementia severity assessment (including Addenbrooke’s Cognitive Assessment, Repeatable Battery for Assessment of Neuropsychological Status, Clinical Dementia Rating Scale). Participants undergoing venepuncture/lumbar puncture as part of the clinical workup will be offered the opportunity to donate additional blood (serum/plasma/whole blood) and cerebrospinal fluid samples for longitudinal storage in the TIMC-BRAiN biobank. Participants are followed at 18-month intervals for repeat clinical and cognitive assessments. Anonymised clinical data and biological samples will be stored securely in a central repository and used to facilitate future studies concerned with advancing the diagnosis and treatment of neurodegenerative diseases.Ethics and disseminationEthical approval has been granted by the St. James’s Hospital/Tallaght University Hospital Joint Research Ethics Committee (Project ID: 2159), which operates in compliance with the European Communities (Clinical Trials on Medicinal Products for Human Use) Regulations 2004 and ICH Good Clinical Practice Guidelines. Findings using TIMC-BRAiN will be published in a timely and open-access fashion.
ProFertil study protocol for the investigation of gonadotropin-releasing hormone agonists (GnRHa) during chemotherapy aiming at fertility protection of young women and teenagers with cancer in Sweden—a phase III randomised double-blinded placebo-controlled study
Authors: Rodriguez-Wallberg Kenny A , Nilsson Hanna Pauline , Bergh Jonas , Malmros Johan , Ljungman Per , Foukakis Theodoros , Stragliotto Christina Linder , Friman Erika Isaksson , Linderholm Barbro , Valachis Antonis , Andersson Anne , Harrysson Sara , Vennström Lovisa , Frisk Per , Mörse Helena , Eloranta Sandra 
Published: December 2023

BackgroundGonadotropin-releasing hormone agonists (GnRHa) cotreatment used to transiently suppress ovarian function during chemotherapy to prevent ovarian damage and preserve female fertility is used globally but efficacy is debated. Most clinical studies investigating a beneficial effect of GnRHa cotreatment on ovarian function have been small, retrospective and uncontrolled. Unblinded randomised studies on women with breast cancer have suggested a beneficial effect, but results are mixed with lack of evidence of improvement in markers of ovarian reserve. Unblinded randomised studies of women with lymphoma have not shown any benefit regarding fertility markers after long-term follow-up and no placebo-controlled study has been conducted so far. The aim of this study is to investigate if administration of GnRHa during cancer treatment can preserve fertility in young female cancer patients in a double-blind, placebo-controlled clinical trial.Methods and analysisA prospective, randomised, double-blinded, placebo-controlled, phase III study including 300 subjects with breast cancer. In addition, 200 subjects with lymphoma, acute leukemias and sarcomas will be recruited. Women aged 14–42 will be randomised 1:1 to treatment with GnRHa (triptorelin) or placebo for the duration of their gonadotoxic chemotherapy. Follow-up until 5 years from end of treatment (EoT). The primary endpoint will be change in anti-Müllerian hormone (AMH) recovery at follow-up 12 months after EoT, relative to AMH levels at EoT, comparing the GnRHa group and the placebo group in women with breast cancer.Ethics and disseminationThis study is designed in accordance with the principles of Good Clinical Practice (ICH-GCP E6 (R2)), local regulations (ie, European Directive 2001/20/EC) and the ethical principles of the Declaration of Helsinki. Within 6 months of study completion, the results will be analysed and the study results shall be reported in the EudraCT database.Study registrationThe National Institutional review board in Sweden dnr:2021–03379, approval date 12 October 2021 (approved amendments 12 June 2022, dnr:2022-02924-02 and 13 December 2022, dnr:2022-05565-02). The Swedish Medical Product Agency 19 January 2022, Dnr:5.1-2021-98927 (approved amendment 4 February 2022). Manufacturing authorisation for authorised medicinal products approved 6 December 2021, Dnr:6.2.1-2020-079580. Stockholm Medical Biobank approved 22 June 2022, RBC dnr:202 253.Trial registration numberNCT05328258; EudraCT number:2020-004780-71.
Factors associated with poor outcomes after congenital heart surgery in low-resource setting in Pakistan: insight from the IQIC Registry – a descriptive analysis
Authors: Furnaz Shumaila , Shaikh Abdul Sattar , Qureshi Rayyan , Fatima Subhani , Bangash Sohail Khan , Karim Musa , Amanullah Muneer 
Published: December 2023

ObjectiveThis study aimed to assess the International Quality Improvement Collaborative single-site data from a developing country to identify trends in outcomes and factors associated with poor outcomes.DesignRetrospective descriptive study.SettingThe National Institute of Cardiovascular Diseases, Karachi, Pakistan.ParticipantsPatients undergoing surgery for congenital heart disease (CHD).Outcome measureKey factors were examined, including preoperative, procedural and demographic data, as well as surgical complications and outcomes. We identified risk factors for mortality, bacterial sepsis and 30-day mortality using multivariable logistic regression.ResultsA total of 3367 CHD surgical cases were evaluated; of these, 59.4% (2001) were male and 82.8% (2787) were between the ages of 1 and 17 years. Only 0.2% (n=6) were infants (≤30 days) and 2.3% (n=77) were adults (≥18 years). The in-hospital mortality rate was 6.7% (n=224), and 4.4% (n=147) and 0.8% (n=27) had bacterial sepsis and surgical site infections, respectively. The 30-day status was known for 90.8% (n=3058) of the patients, of whom 91.6% (n=2800) were alive. On multivariable analysis, the adjusted OR for in-hospital mortality was 0.40 (0.29–0.56) for teenagers compared with infancy/childhood and 1.95 (1.45–2.61) for patients with oxygen saturation <85%. Compared with Risk Adjustment for Congenital Heart Surgery (RACHS-1) risk category 1, the adjusted OR for in-hospital mortality was 1.78 (1.1–2.87) for RACHS-1 risk category 3 and 2.92 (1.03–8.31) for categories 4–6. The adjusted OR for 30-day mortality was 0.40 (0.30–0.55) for teenagers and 1.52 (1.16–1.98) for patients with oxygen saturation <85%. The 30-day mortality rate was significantly higher in RACHS-1 risk category 3 compared with category 1, with an adjusted OR of 1.64 (1.06–2.55).ConclusionsWe observed a high prevalence of postoperative infections and mortality, especially for high-risk procedures, according to RACHS-1 risk category, in infancy/childhood, in children with genetic syndrome or those with low oxygen saturation (<85%).
Predictive factors of poor outcome and mortality among anterior ischaemic stroke patients despite successful recanalisation in China: a secondary analysis of the CAPTURE trial
Authors: Li Guangwen , Sun Yujie , Liu Tonghui , Yang Pengfei , Peng Ya , Chen Wenhuo , Zhang Liyong , Chu Jianfeng , Kuai Dong , Wang Zibo , Wu Wei , Xu Yun , Zhou Bin , Geng Yu , Yin Congguo , Li Jiang , Wang Ming , Peng Xiaoxiang , Xiao Yaping , Li Minghua , Zhang Xianjun , Liu Peng , Wang Naidong , Zhang Yong 
Published: December 2023

ObjectivesThis work aimed to analyse the risk factors for poor outcomes and mortality among patients with anterior large vessel occlusion (LVO) ischaemic stroke, despite successful recanalisation.Setting and participantsThis study conducted a secondary analysis among patients who underwent successful recanalisation in the CAPTURE trial. The trial took place between March 2018 and September 2020 at 21 sites in China. The CAPTURE trial enrolled patients who had an acute ischaemic stroke aged 18–80 years with LVO in anterior circulation.InterventionsThrombectomy was immediately performed using Neurohawk or the Solitaire FR after randomisation in CAPTURE trial. Rescue treatment was available for patients with severe residual stenosis caused by atherosclerosis.Primary and secondary outcome measuresThe primary goal was to predict poor 90-day survival or mortality within 90 days post-thrombectomy. Univariate analysis, using the χ2test or Fisher’s exact test, was conducted for each selected factor. Subsequently, a multivariable analysis was performed on significant factors (p≤0.10) identified through univariate analysis using the backward selection logistic regression approach.ResultsAmong the 207 recruited patients, 79 (38.2%) exhibited poor clinical outcomes, and 26 (12.6%) died within 90 days post-thrombectomy. Multivariate analysis revealed that the following factors were significantly associated with poor 90-day survival: age ≥67 years, internal carotid artery (ICA) occlusion (compared with middle cerebral artery (MCA) occlusion), initial National Institutes of Health Stroke Scale (NIHSS) score ≥17 and final modified Thrombolysis in Cerebral Infarction (mTICI) score 2b (compared with mTICI 3). Additionally, the following factors were significantly associated with mortality 90 days post-thrombectomy: initial NIHSS score ≥17, ICA occlusion (compared with MCA occlusion) and recanalisation with more than one pass.ConclusionsAge, NIHSS score, occlusion site, mTICI score and the number of passes can be independently used to predict poor 90-day survival or mortality within 90 days post-thrombectomy.Trial registration numberNCT04995757.
Exploring the patient experience of remote hypertension management in Scotland during COVID-19: a qualitative study
Authors: Mchale Sheona , Paterson Mary , Pearsons Alice , Neubeck Lis , Atherton Iain , Guthrie Bruce , McKinstry Brian , Hanley Janet 
Published: December 2023

ObjectivesThe aim of this study was to understand how patients experienced hypertension management, with or without blood pressure (BP) telemonitoring, during the COVID-19 pandemic.Design, methods, participants and settingThis qualitative study conducted between April and November 2022 consisted of 43 semistructured telephone interviews (23 men and 20 women) from 6 primary care practices in one area of Scotland.ResultsFrom the views of 25 participants with experience of using the Connect Me telemonitoring service and 18 participants without such experience, 5 themes were developed. These were: (1) navigating access to services. There were challenges to gaining timely and/or in-person access to services and a reluctance to attend clinical settings because participants were aware of their increased risk of contracting the COVID-19 virus. (2) Adapting National Health Service services. All six practices had adapted care provision in response to potential COVID-19 transmission; however, these adaptations disrupted routine management of in-person primary care hypertension, diabetes and/or asthma checks. (3) Telemonitoring feedback. Telemonitoring reduced the need to attend in-person primary care practices and supported access to remote healthcare monitoring and feedback. (4) Self-management. Many non-telemonitoring participants were motivated to use self-management strategies to track their BP using home monitoring equipment. Also, participants were empowered to self-manage lifestyle and hypertension medication. (5) Experience of having COVID-19. Some participants contracting the COVID-19 virus experienced an immediate increase in their BP while a few experienced ongoing increased BP readings.ConclusionsThe COVID-19 pandemic disrupted routine in-person care for patients with hypertension. Both telemonitoring and some non-telemonitoring patients were motivated to self-manage hypertension, including self-adjusting medication; however, only those with access to telemonitoring had increased access to hypertension monitoring and feedback. BP telemonitoring permitted routine care to continue for participants in this study and may offer a service useful in pandemic proofing hypertension healthcare in the future.
Prevalence and related factors of children myopia in Pudong New Area, Shanghai: a cross-sectional study
Authors: Cheng Peng , Zhang Xiaohua , Zhou Wei , Xu Jiawei , Chen Fangrong , Qian Dan , Cao Bin 
Published: December 2023

ObjectivesThis study aimed to assess the prevalence and related factors of myopia among school-aged children after COVID-19 pandemic.DesignCross-sectional study.SettingPudong New Area, Shanghai.Participants1722 children aged 7–9 randomly selected from 8 primary schools were screened from 1 February 2023 to 30 April 2023.Main outcome measuresChildren’s height, weight and eye parameters were examined. Myopia was defined as a cycloplegic spherical equivalent ≤−0.50 dioptres in either eye. A vision-related behaviour questionnaire was applied to investigate the associations between myopia and its risk factors.ResultsOf the 1722 individuals enrolled, 25.6% (456) had myopia. After adjusting other characteristics, the following factors were associated with an increased rate of myopia: age (9 years vs 7 years, adjusted OR (AOR) 1.84, 95% CI 1.18 to 2.85, p=0.007), parental myopia status (both myopia vs none, AOR 5.66, 95% CI 3.71 to 8.63, p<0.001; one myopia vs none, AOR 2.92, 95% CI 1.93 to 4.42, p<0.001), reading books too close (yes vs no, AOR 1.58, 95% CI 1.20 to 2.08, p=0.001), writing with a tilted head (yes vs no, AOR 1.37, 95% CI 1.05 to 1.77, p=0.019), sleep patterns (early to bed late to rise vs early to bed early to rise, AOR 1.52, 95% CI 1.02 to 2.26, p=0.039). By contrast, a higher monthly household income and the habit of reading while lying down were associated with lower risk of myopia.ConclusionsThe prevalence of myopia is of concern among young school-aged children after COVID-19. Correcting eye use behaviour and improving sleep habits may reduce myopia. Also, gender differences should be considered in prevention strategies for children’s myopia.
Risk prediction and treatment assessment in glioma patients using SEER database: a prospective observational study
Authors: Li XinRong , Shao Yan , Wang ZeMing , Zhu JunQuan 
Published: December 2023

ObjectivesTo use a nomogram to predict the risk of mortality and estimate the impact of current treatment on the prognosis of glioma patients.MethodsA total of 3798 cases were obtained from the Surveillance Epidemiology and End Results database according to the selection criteria. A nomogram was built on the independent clinical factors screened by the variance inflation factor, univariate analyses and a multivariate Cox regression model. Then, categorising the overall population into high-risk, medium-risk and low-risk groups using nomogram-derived risk scores, to study the impact of treatment on different subgroups’ survival outcomes. Furthermore, based on the postmatch cohorts, the influences of treatment on survival outcomes were assessed by the log-rank test.ResultAge, race, stage of disease, histological type, histological grade, surgery, radiotherapy and chemotherapy were identified as the independent prognostic factors. A nomogram with good discrimination and consistency was built. Generally, the patients who underwent surgery, radiotherapy and chemotherapy were more likely to achieve better prognosis than those who did not, except for those who received radiotherapy in the low-risk cohort and those who underwent surgery in the high-risk cohort. Furthermore, the isocitrate dehydrogenase 1/2 (IDH1/2) wild-type patients with surgery, radiotherapy or chemotherapy tended to have higher survival probabilities, while some inconsistent results were observed in the IDH mutant-type cohort.ConclusionSurgery, radiotherapy and chemotherapy improved the prognosis, while appropriate selection of topical treatment for the low-risk or high-risk patients deserves further consideration. IDH status gene might be a reliable indicator of therapeutic effectiveness.
Frailty Assessment in Vascular OUtpatients Review (FAVOUR) protocol: single-centre prospective cohort study comparing feasibility and prognostic value of commonly used frailty assessment tools
Authors: Welsh Silje Alvsaaker , Hussey Keith , Brittenden Julie , Orr Douglas J , Quinn Terry 
Published: December 2023

IntroductionFrailty has consistently demonstrated associations with poorer healthcare outcomes. Vascular guidelines have recognised the importance of frailty assessment. However, an abundance of frailty tools and a lack of prospective studies confirming suitability of routine frailty assessment in clinical practice has delayed the uptake of these guidelines. The Frailty Assessment in Vascular OUtpatients Review study speaks to this evidence gap. The primary aim is to assess feasibility of implementing routine frailty assessment in a reproducible outpatient setting. Secondary objectives include comparing prognostic values and interuser agreement across five frailty assessment tools.Methods and analysisThis single-centre prospective cohort study of feasibility is conducted in a rapid-referral vascular surgery clinic, serving a population of 2 million. Adults with capacity (>18 years), attending a clinic for any reason, are eligible for inclusion. Five assessments are completed by patient (Rockwood Clinical Frailty Scale (CFS) and Frail NonDisabled Questionnaire), clinician (CFS, Healthcare Improvement Scotland FRAIL tool and ‘Initial Clinical Evaluation’) and researcher (11-item modified Frailty Index). Consistent with feasibility objectives, outcome measures include recruitment rates, frailty assessment completion rates, time-to-complete assessments and interuser variability. Electronic follow-up at 30 days and 1 year will assess home-time and mortality as prognostic indicators. Patients treated surgically/endovascularly will undergo additional 30-day and 1-year postoperative follow-up, outcome measures include: surgical procedure, mortality, complications (according to Clavien-Dindo Classification), length of stay, readmission rates, non-home discharge, home-time, higher social care requirements on discharge and amputation-free survival. Prognostic value will be compared by area under receiver operating characteristic curves. Continuous outcome variables will be analysed using Spearman’s rank correlation coefficient. Interuser agreement will be compared by percentage agreement in Cohen’s kappa coefficient. Ethics and disseminationThe study is sponsored by National Health Service Greater Glasgow and Clyde (R&IUGN23CE014). London-Riverside REC (23/PR/0062) granted ethical approval. Results will be disseminated through publication in peer-reviewed vascular surgery and geriatric medicine themed journals and presentation at similar scientific conferences.Trials registration numberNCT06040658. Stage of study: pre-results.