bluuebunny/crossref_metadata_2025_split huggingface dataset:
Improving our understanding of the social determinants of mental health: a data linkage study of mental health records and the 2011 UK census
Authors: Cybulski Lukasz , Chilman Natasha , Jewell Amelia , Dewey Michael , Hildersley Rosanna , Morgan Craig , Huck Rachel , Hotopf Matthew , Stewart Robert , Pritchard Megan , Wuerth Milena , Das-Munshi Jayati 
Published: January 2024

ObjectivesTo address the lack of individual-level socioeconomic information in electronic healthcare records, we linked the 2011 census of England and Wales to patient records from a large mental healthcare provider. This paper describes the linkage process and methods for mitigating bias due to non-matching.SettingSouth London and Maudsley NHS Foundation Trust (SLaM), a mental healthcare provider in Southeast London.DesignClinical records from SLaM were supplied to the Office of National Statistics for linkage to the census through a deterministic matching algorithm. We examined clinical (International Classification of Disease-10 diagnosis, history of hospitalisation, frequency of service contact) and socio-demographic (age, gender, ethnicity, deprivation) information recorded in Clinical Record Interactive Search (CRIS) as predictors of linkage success with the 2011 census. To assess and adjust for potential biases caused by non-matching, we evaluated inverse probability weighting for mortality associations.ParticipantsIndividuals of all ages in contact with SLaM up until December 2019 (N=459 374).Outcome measuresLikelihood of mental health records’ linkage to census.Results220 864 (50.4%) records from CRIS linked to the 2011 census. Young adults (prevalence ratio (PR) 0.80, 95% CI 0.80 to 0.81), individuals living in more deprived areas (PR 0.78, 95% CI 0.78 to 0.79) and minority ethnic groups (eg, Black African, PR 0.67, 0.66 to 0.68) were less likely to match to census. After implementing inverse probability weighting, we observed little change in the strength of association between clinical/demographic characteristics and mortality (eg, presence of any psychiatric disorder: unweighted PR 2.66, 95% CI 2.52 to 2.80; weighted PR 2.70, 95% CI 2.56 to 2.84).ConclusionsLower response rates to the 2011 census among people with psychiatric disorders may have contributed to lower match rates, a potential concern as the census informs service planning and allocation of resources. Due to its size and unique characteristics, the linked data set will enable novel investigations into the relationship between socioeconomic factors and psychiatric disorders.
Determinants and acceptability of HIV self-testing among vulnerable groups in sub-Saharan Africa: A scoping review protocol
Authors: Anyiam Felix Emeka , Sibiya Maureen Nokuthula , Oladimeji Olanrewaju 
Published: January 2024

IntroductionHIV self-testing (HIVST) is where individuals collect their specimens and perform the HIV test privately. HIVST has improved testing uptake and coverage, especially among vulnerable groups of sub-Saharan Africa (SSA). Vulnerable groups include key populations such as men who have sex with men, sex workers, people who inject drugs, lesbian, gay, bisexual and transgender persons and young women. However, little is known about the determinants and acceptability of HIVST among these groups in SSA. Therefore, this scoping review aims to explore the determinants and acceptability of HIVST among vulnerable groups in SSA.MethodsA scoping review will be conducted using the Arksey and O’Malley framework and further refined by Levac framework. The review will follow a six-step approach: (1) identifying the research question, (2) identifying relevant studies, (3) study selection eligibility, (4) charting the data, (5) collating, summarising and reporting the results and (6) consultation. A comprehensive search strategy will be developed, and the following electronic databases will be searched: MEDLINE, Embase, Global Health and the Cochrane Library. Grey literature will also be searched, including conference abstracts and reports. Eligibility criteria will include studies conducted in SSA, published between 2010 and 2023, focusing on vulnerable groups and exploring the determinants and acceptability of HIVST. Two independent reviewers will screen identified studies’ titles, abstracts and full texts. Any disagreements will be resolved through discussion or consultation with a third reviewer. Data extraction will be conducted using a standardised form.Ethics and disseminationThis review, not requiring ethical approval, aims to inform policy and intervention design to boost HIV testing adoption within vulnerable communities. We plan to disseminate our findings via a peer-reviewed journal, policy briefs, conference presentations and stakeholder engagement.
Association between N-terminal pro-B-type natriuretic peptide and clinical outcomes in bedridden patients with stroke: a cross-sectional study
Authors: Li Dongxia , Zhou Mingchao , Zha Fubing , Long Jianjun , Wang Yulong 
Published: January 2024

ObjectivesPatients with stroke often remain bedridden despite rehabilitation. Serum N-terminal pro-B-type natriuretic peptide (NT-pro-BNP) levels increase after stroke. Our study aimed to investigate the difference in NT-pro-BNP levels between bedridden and non-bedridden patients with stroke and to explore the factors influencing NT-pro-BNP levels in bedridden patients.DesignA single-centre, cross-sectional study.SettingThis study was conducted in a hospital, Shenzhen, China.ParticipantsBetween January 2019 and December 2022, 465 participants were included in this study.Outcome measuresThe collected data included basic information, laboratory data and echocardiographic parameters. Binary logistic regression analysis and receiver operating characteristic curves were used to identify factors associated with high NT-pro-BNP levels.ResultsBedridden patients with stroke had higher levels of NT-pro-BNP, D-dimer, high-sensitivity C reactive protein (hs-CRP) and lower levels of creatinine, high-density lipoprotein cholesterol, albumin and haemoglobin, as well as lower left ventricular ejection fraction, fractional shortening and the ratio between the peak velocities of early and late diastolic filling than non-bedridden patients. In bedridden patients, age ≥75 years, high levels of hs-CRP and creatinine, and low levels of albumin were associated with high NT-pro-BNP levels. In non-bedridden patients, age ≥75 years and high creatinine levels were associated with high NT-pro-BNP levels. In bedridden patients with stroke, the area under the curve (AUC) of hs-CRP was 0.700 (p<0.001, 95% CI 0.638 to 0.762) with a cut-off value of 5.12 mg/L. The AUC of albumin was 0.671 (p<0.001, 95% CI 0.606 to 0.736) with a cut-off value of 37.15 g/L.ConclusionsNT-pro-BNP levels were higher in bedridden patients with stroke than in non-bedridden patients. Decreased albumin and elevated hs-CRP levels were associated with high levels of NT-pro-BNP in bedridden patients. Further studies are needed to explore the risk stratification and potential treatments for elevated NT-pro-BNP in bedridden patients with stroke.
Effects of 6 weeks of cryotherapy plus compression therapy after total or unicompartmental knee arthroplasty: protocol for a single-centre, single-blind randomised controlled trial
Authors: de Vries Astrid J , Aksakal Haci K , Brouwer Reinoud W 
Published: January 2024

IntroductionEffective rehabilitation after total knee arthroplasty (TKA) and unicompartmental knee arthroplasty (UKA) is often impeded by pain and swelling. Beneficial short-term effects in terms of pain and opioid use after a short period of cryotherapy (±compression therapy) have been demonstrated. The effectiveness of a longer intervention period on longer-term postoperative outcomes is unclear. This study aims to assess the effects of 6 weeks of cryotherapy plus compression therapy on pain, functioning and patient satisfaction after TKA or UKA.Methods and analysisA single-centre, single-blind randomised controlled trial will be conducted at a teaching hospital in the Netherlands. Patients over age 18 with end-stage osteoarthritis planned for a TKA or UKA are eligible; 104 UKA and 104 TKA patients will be included. Both groups will be randomly allocated (1:1) into an intervention group receiving 6 weeks of cryotherapy plus compression therapy (commencing after discharge from hospital) or a control group (usual care). The primary endpoint is perceived pain at rest at 6 weeks postoperatively. Secondary outcomes include compliance with cold protocol, pain at rest during the first six postoperative weeks and at 6 and 12 months postoperatively, pain on weight bearing, opioid use, functioning, patient satisfaction and complications.Ethics and disseminationThe local medical ethics committee MEC-U approved the study protocol (R22.095/NL-number NL81956.100.22). The study will be conducted in accordance with the Declaration of Helsinki and Good Clinical Practice regulations, and personal data will be handled in agreement with the Dutch Personal Data Protection Act (AGV). Written informed consent will be obtained prior to performing any of the study procedures. We will disseminate study results through multiple peer-reviewed publications and through conference presentations.Trial registration numberNCT05572359.
Exploring the value of structured narrative feedback within the Serious Illness Conversation-Evaluation Exercise (SIC-Ex): a qualitative analysis
Authors: Ko Jenny , Roze des Ordons Amanda , Ballard Mark , Shenkier Tamara , Simon Jessica E , Fyles Gillian , Lefresne Shilo , Hawley Philippa , Chen Charlie , McKenzie Michael , Sanders Justin , Bernacki Rachelle 
Published: January 2024

ObjectivesThe Serious Illness Conversation Guide (SICG) has emerged as a framework for conversations with patients with a serious illness diagnosis. This study reports on narratives generated from open-ended questions of a novel assessment tool, the Serious Illness Conversation-Evaluation Exercise (SIC-Ex), to assess resident-led conversations with patients in oncology outpatient clinics.DesignQualitative study using template analysis.SettingThree academic cancer centres in Canada.Participants7 resident physicians (trainees), 7 patients from outpatient cancer clinics, 10 preceptors (raters) consisting of medical oncologists, palliative care physicians and radiation oncologists.InterventionsEach trainee conducted an SIC with a patient, which was videotaped. The raters watched the videos and evaluated each trainee using the novel SIC-Ex and the reference Calgary-Cambridge Guide (CCG) initially and again 3 months later. Two independent coders used template analysis to code the raters’ narrative comments and identify themes/subthemes.Outcome measuresHow narrative comments aligned with elements of the CCG and SICG.ResultsTemplate analysis yielded four themes: adhering to SICG, engaging patients and family members, conversation management and being mindful of demeanour. Narrative comments identified numerous verbal and non-verbal elements essential to SICG. Some comments addressing general skills in engaging patients/families and managing the conversation (eg, setting agenda, introduction, planning, exploring, non-verbal communication) related to both the CCG and SICG, whereas other comments such as identifying substitute decision maker(s), affirming commitment and introducing Advance Care Planning were specific to the SICG.ConclusionsNarrative comments generated by SIC-Ex provided detailed and nuanced insights into trainees’ competence in SIC, beyond the numerical ratings of SIC-Ex and the general communication skills outlined in the CCG, and may contribute to a more fulsome assessment of SIC skills.
Developing and testing culturally relevant bolt-on items for EQ-5D-5L in Chinese populations: a mixed-methods study protocol
Authors: Mao Zhuxin , Fan Jingzhi , Rencz Fanni , Yang Zhihao , Luo Nan , Wang Pei 
Published: January 2024

IntroductionEQ-5D is one of the most frequently used health-related quality of life (HRQoL) measures but has been found to be insensitive in detecting differences in health status in some general populations and disease groups. For example, the appropriateness of applying EQ-5D in the Chinese cultural setting has been widely discussed. Adding additional HRQoL dimensions (bolt-on items) can be a solution to both retain the original descriptive system of EQ-5D, while enhancing its sensitivity to the local context. To date, no studies have proposed culturally relevant bolt-ons for China or examined the psychometric properties of such bolt-on items. This protocol documents the identification, development, selection and psychometric testing of culturally relevant bolt-on items for EQ-5D-5L in China.Methods and analysisWe will identify and develop candidate bolt-on items that are most relevant in the Chinese culture, through former literature reviews on health concepts important for the Chinese population, conducting expert consultations and qualitative interviews. We will quantitatively test the acceptability and measurement properties (including distributional characteristics and construct validity) of the candidate items in both general and disease populations in a cross-sectional setting. The patient group will be followed up to collect two-time-point data to assess test–retest reliability of the candidate items. Bolt-on item selection will consider both the qualitative and quantitative evidence gathered. This protocol outlines a comprehensive mixed-methods process for identifying, developing, selecting and testing bolt-on items that are relevant and culturally appropriate in China. This study may serve as a guide for similar initiatives in other cultural contexts.Ethics and disseminationThis study received ethics approval from the Institutional Review Board of School of Public Health, Fudan University (IRB number: 2022-TYSQ-03-154). Study findings will be disseminated through international peer-reviewed journal articles as well as public, academic presentations at national and international conferences.
Expanding the phenotype of Kleefstra syndrome: speech, language and cognition in 103 individuals
Authors: Morison Lottie D. , Kennis Milou G.P. , Rots Dmitrijs , Bouman Arianne , Kummeling Joost , Palmer Elizabeth , Vogel Adam P. , Liegeois Frederique , Brignell Amanda , Srivastava Siddharth , Frazier Zoe , Milnes Di , Goel Himanshu , Amor David J. , Scheffer Ingrid E. , Kleefstra Tjitske , Morgan Angela T. 
Published: January 2024

ObjectivesSpeech and language impairments are core features of the neurodevelopmental genetic condition Kleefstra syndrome. Communication has not been systematically examined to guide intervention recommendations. We define the speech, language and cognitive phenotypic spectrum in a large cohort of individuals with Kleefstra syndrome.Method103 individuals with Kleefstra syndrome (40 males, median age 9.5 years, range 1–43 years) with pathogenic variants (52 9q34.3 deletions, 50 intragenic variants, 1 balanced translocation) were included. Speech, language and non-verbal communication were assessed. Cognitive, health and neurodevelopmental data were obtained.ResultsThe cognitive spectrum ranged from average intelligence (12/79, 15%) to severe intellectual disability (12/79, 15%). Language ability also ranged from average intelligence (10/90, 11%) to severe intellectual disability (53/90, 59%). Speech disorders occurred in 48/49 (98%) verbal individuals and even occurred alongside average language and cognition. Developmental regression occurred in 11/80 (14%) individuals across motor, language and psychosocial domains. Communication aids, such as sign and speech-generating devices, were crucial for 61/103 (59%) individuals including those who were minimally verbal, had a speech disorder or following regression.ConclusionsThe speech, language and cognitive profile of Kleefstra syndrome is broad, ranging from severe impairment to average ability. Genotype and age do not explain the phenotypic variability. Early access to communication aids may improve communication and quality of life.
Prevalence and burden of pain across the entire spectrum of Huntington’s disease
Authors: Sprenger Gregory P , van Zwet Erik W , Bakels Hannah S , Achterberg Wilco P , Roos Raymund A , de Bot Susanne T 
Published: January 2024

Background
Pain is an important symptom in Huntington’s disease (HD), however, not systematically studied and understood. The objective of the current study is to assess the prevalence of pain, pain interference in daily activities, painful conditions, analgesic use and the severity of the pain burden across different disease stages and ‘Age at symptom Onset’ groups. Additionally, the association between pain and disease burden was investigated.

Methods
A cross-sectional analysis was conducted within two large data sets, which included different types of pain scales. Multivariable logistic regression analyses and analyses of variance were performed to compare the pain levels with those in the general population. The analyses were adjusted for sex and age. Locally Estimated Scatterplot Smoothing was used to test the association between pain and the HD pathology score: a measure of disease burden.

Results
The mean prevalence of pain in the HD population was 40% and for pain interference around 35% in both data sets. Patients in the early, middle and late stage of HD experience more pain burden compared with what is reported in patients with chronic pain (p<0.01). A positive and significant association was demonstrated between pain and disease burden. Patients in late stage HD with pain use significantly less analgesics compared with the general population (5% vs 13%, respectively (p<0.01)).

Conclusions
Pain is a prevalent and important symptom in HD. Severe pain burden in the HD population is present and positively associated with disease burden. Risk for undertreatment with analgesics is nevertheless present. Awareness of pain in HD needs to be increased, both clinically and scientifically.
Can AMH Replace Ultrasound in the Diagnosis of PCOS
Authors: Norman Robert 
Published: January 2024

AMH is a hormone released by the developing and small follicles in the ovary. It circulates in the blood and has actions in the hypothalamus as well as in the ovary. Measurement of AMH is now well established and is routine in women who will undergo ovarian stimulation. AMH is also a measure of the number of small follicles in the ovary and correlates well with the ultrasound assessment of follicle numbers. It is now part of the recommended diagnostic criteria contributing to determination of polycystic morphology and can replace the need for a diagnostic ultrasound. Values are age dependant, affected by the oral contraceptive pill and weight and variable depending on the immunoassay used. In this talk I will discuss the latest development in AMH as a diagnostic tool contributing to the diagnosis of PCOS.
Adenomyosis and Endometriomas & Assessing the Rectosigmoid Colon
Authors: Piessens Sofie 
Published: January 2024

Endometriosis is a common and often debilitating gynaecological disorder that affects 5-10% of women. The prevalence is even higher among women with symptoms of endometriosis. Approximately 80% of women suffering from endometriosis have superficial lesions while 20% have deep infiltrating endometriosis. Laparoscopy has always been considered the gold standard for diagnosing endometriosis as it allows diagnosis of both forms of endometriosis and often immediate removal of superficial endometriosis. The removal of deep infiltrating endometriosis is however significantly more complex, particularly when pouch of Douglas obliteration, bowel nodules or bladder nodules are present. Unless it was diagnosed preoperatively, the removal can usually not be completed because a multidisciplinary approach is often required with the involvement of a urologist or a colorectal surgeon. Over the last 15 years it has been well established in the literature that transvaginal ultrasound allows preoperative diagnosis of deep infiltrating endometriosis. The preoperative diagnosis of DIE with transvaginal ultrasound facilitates a more patient-centred approach to endometriosis management because an accurate preoperative documentation of the location and extent of the disease allows for referral to an endometriosis expert and/or bowel surgeon, better preoperative planning, less repetitive surgery, and better outcomes for women. The presentation on ‘Endometriomas and Adenomyosis’ will highlight the importance of these findings as red flags for the presence of deep endometriosis but also touch on how these conditions change over time with pregnancy and menopause. The presentation on ‘Assessing the rectosigmoid colon’ gives an overview on how to systematically assess the rectosigmoid for the presence of deep endometriosis nodules, and when this assessment must be included in the assessment of the pelvis.
Diagnosing Superficial Endometriosis with Ultrasound?
Authors: Leonardi Mathew 
Published: January 2024

This presentation focuses on the utility of ultrasound in diagnosing superficial endometriosis, a challenging condition to detect using traditional imaging methods. Superficial endometriosis refers to lesions on the surface of pelvic organs and peritoneum, causing severe pain and infertility. The presentation will highlight ultrasound’s potential as a non-invasive and cost-effective tool for detecting superficial endometriosis. Transvaginal and specialized ultrasound procedure approaches will be discussed including saline-infusion sonoPODography, enabling precise visualization of superficial lesions. Understanding sonographic features to distinguish superficial endometriosis from other pelvic pathologies was stressed, underscoring the role of skilled sonographers and clinicians. Early detection through ultrasound can lead to timely intervention and improved patient outcomes.
Assessing the Uterosacral Ligaments
Authors: Leonardi Mathew 
Published: January 2024

This presentation focused on evaluating uterosacral ligaments, crucial anatomical structures supporting the uterus within the pelvic cavity. These ligaments are the most common site of deep endometriosis. Historically, it was thought that normal uterosacral ligaments could not be seen with ultrasound. Current literature suggests deep endometriosis visualization on ultrasound has a low sensitivity, suggesting even abnormal uterosacral ligaments are being inadequately evaluated. In this presentation, it will demonstrate that both normal and abnormal uterosacral ligaments can be visualized on ultrasound. The approach to sonographic visualization will be elucidated. The scenario of severe posterior compartment deep endometriosis and adhesions will be discussed to guide imaging experts to break down very complex anatomical distortion.