To develop and user-test a patient decision aid for people diagnosed with degenerative cervical myelopathy and who are considering surgery.
Mixed-methods study describing the development of a patient decision aid.
A draft decision aid was developed by a multidisciplinary steering group (including study authors with degenerative cervical myelopathy, health professionals and researchers) informed by the best available evidence, authorship consensus and existing patient decision aids.
Patient-participants and health professional-participants who manage people with degenerative cervical myelopathy were recruited through social media and the steering group’s research and practice network. Quantitative questionnaires were used to gather baseline data, descriptive feedback, refine the decision aid and assess its acceptability. Qualitative semi-structured interviews were conducted online to gather feedback on the decision aid and were analysed using reflexive thematic analysis.
We conducted 32 interviews: 19 patient-participants and 13 health professional-participants who manage people with degenerative cervical myelopathy (neurosurgeons, neurologists, physiotherapists, orthopaedic surgeons, general practitioners, rehabilitation and pain specialists and consultant occupational physicians and chiropractors). Participants were from 10 countries (Australia, Canada, Cyprus, Germany, Ireland, New Zealand, Sweden, Switzerland, United Kingdom and USA). Most participants rated the decision aid’s acceptability as good-to-excellent and agreed with most aspects of the decision aid (eg, defining degenerative cervical myelopathy, management recommendations, potential benefits and harms, questions to consider asking a health professional).
Our patient decision aid was rated as an acceptable tool by both health professional-participants who treat degenerative cervical myelopathy and patient-participants with lived experience of degenerative cervical myelopathy. This decision aid can be used by clinicians and people with degenerative cervical myelopathy to help with shared decision making following a diagnosis of degenerative cervical myelopathy. A study testing the potential benefits of this decision aid in a clinical setting is recommended.
Outcomes for degenerative cervical myelopathy (DCM) patients are limited by delayed and missed diagnoses, driven in part by poor professional awareness. Despite DCM being the most common cause of adult spinal cord injury, it remains under-recognised and undertaught in clinical education. Lessons from other common pathology like stroke and acute myocardial infarction highlight the potential of education to improve early diagnosis. This study will develop a professional education strategy to improve early DCM diagnosis. It will define key audiences and identify an effective delivery method, laying the groundwork for a sustained, targeted intervention.
The study aims to define who needs to know about DCM, what they need to know and how they can learn it. This will be carried out in three phases: phase 1—who and what: to establish the target population and to define core competencies for the educational intervention; phase 2—how: to create and review the educational intervention; phase 3—evaluation: to test whether the framework is an improvement to existing strategies.
Ethical approval is in place from the University of Cambridge (HBREC.2024.24). Results from the study will be disseminated through scientific publication, conference presentation, blog posts and podcasts.
CRD42023461838
Accessible, person-centred, non-pharmacologic modalities are needed to address chronic pain and health-related quality of life (HRQoL) among individuals with sickle cell disease (SCD). Building off prior single-site pilot studies of music therapy (MT) in SCD, the purpose of this study is to (1) examine the data collection processes and intervention implementation overall and across two sites and (2) evaluate the implementation of the MT and health education interventions using quantitative and qualitative data.
This three-arm, two-site, feasibility randomised controlled trial will include 90 individuals ≥14 years who have SCD, chronic pain and access to a mobile device who are not currently engaged in mind-body pain management interventions under the supervision of a healthcare professional. Participants will be randomised to six sessions over 8 weeks of either: (1) in-person MT, (2) hybrid (one in-person, five virtual) MT or (3) hybrid health education. Patient-reported outcome measures of HRQoL and self-efficacy will be assessed at baseline, post-intervention and 6 weeks post-intervention. 24 participants (eight per arm) and 20 stakeholders (eg, haematologists, music therapists, nurses) will be invited to complete semi-structured interviews to further examine intervention acceptability, perceived benefits and implementation. Sessions will be monitored for fidelity, and participants lacking access to home internet or videoconferencing technology will be provided tablets to engage in virtual sessions. Feasibility will be determined by rates of data completion, recruitment, retention, session attendance and home practice.
This study was approved by the University Hospitals Cleveland Medical Center Institutional Review Board (STUDY20231055). The dissemination plan includes presenting findings at national and international scientific conferences and publishing in peer-reviewed journals. All activities will be conducted in collaboration with SCD community stakeholders.
To describe the point prevalence of cognitive impairment in hospitalised adults and evaluate the association with care needs and perceived risks of complications.
Multi-site cross-sectional study on a single day in May 2023.
Trained clinician auditors screened adult inpatients in acute medical, surgical, oncology, geriatric, mental health, convalescent, and rehabilitation wards for cognitive impairment using the 4AT in seven healthcare facilities and recorded need for support with basic activities of daily living, incontinence, and perceived risks of complications (falls, pressure injuries, and malnutrition). Data were summarised and compared across 4AT categories, and the strength of association between 4AT and each outcome was estimated using multivariable regression models.
Data were available for 1145 inpatients on 68 wards (mean age 68 years [SD = 18], 583 [58.9%] female, 449 [39.2%] on acute medical units). Cognitive impairment (4AT of 1 or more) was identified in 482 (42.1%) participants. Participants with 4AT 1–3 had 2.0–3.6 times the odds of need for supervision or assistance with activities of daily living, while those with 4AT 4 or more had 2.9–5.3 times the odds of need for assistance.
Cognitive impairment is very common in adult inpatients and is associated with significantly higher physical care needs.
Hospital care models must support staff to address the higher care needs in people with cognitive impairment to protect a large patient group from hospital-acquired harm.
No patient or public contribution.
This study adheres to the STROBE reporting guidelines.
Urgent and emergency care (UEC) systems in England face unprecedented pressures, with record accident and emergency attendances, persistent breaches of ambulance response targets and poorer outcomes for time-sensitive conditions. National UEC recovery plans have introduced multiple innovations—such as same-day emergency care, virtual wards and specialty hubs—to manage these pressures and improve patient flow. Rural coastal areas are particularly vulnerable to excessive demand due to higher levels of deprivation, older populations with complex health needs, seasonal surges that generate unpredictable demand and challenges in attracting and retaining staff. Following the Chief Medical Officer’s 2021 Annual Report, funding research and developing bespoke solutions to manage UEC demand and address geographical disparities has been recognised as a national priority. The Elevate study responds to this priority by identifying and evaluating innovative models of UEC in rural coastal communities in England.
The Elevate study is a 30-month, mixed-methods evaluation that comprises three interlinked work packages: (1) National service mapping—outlining provision of innovative models of UEC in rural coastal areas of England. This will be developed through document review and interviews with regional and national service leaders. (2) Quantitative analysis—quasiexperimental and longitudinal approaches will use National Health Service (NHS) England’s Emergency Care Data Set and linked routine NHS datasets to evaluate the impact of UEC models on health and process outcomes. Standard and bespoke metrics will be developed and used to assess performance. (3) Qualitative case studies—up to 12 case studies of UEC models in rural coastal communities. Interviews with patients and staff and non-participant observation will explore how and why different UEC models influence patient experience, clinical outcomes, resource use and the workforce. Findings will be integrated using the Consolidated Framework for Implementation Research to identify components of UEC models that are effective, scalable and sensitive to local context,
Ethical approval for qualitative components was granted by the North of Scotland Research Ethics Committee (25/NS/0099). Dissemination will include peer-reviewed publications, policy briefs, creative media and community engagement activities to ensure findings are communicated inclusively and effectively to policymakers, health and social care practitioners and the public.
Research Registry (researchregistry11126).
Administering supplemental oxygen to prevent hypoxaemia is a fundamental treatment for patients hospitalised with acute injury or illness. However, the amount of oxygen administered frequently exceeds that needed to maintain normoxaemia, causing patients to experience hyperoxaemia and wasting supplemental oxygen. Closed-loop, autonomous oxygen titration systems are designed to optimise oxygen delivery by administering the lowest possible oxygen flow that maintains peripheral oxygen saturation (SpO2) within a predefined range. For adults hospitalised with an acute injury or illness, it remains uncertain whether the use of a closed-loop, autonomous oxygen titration system safely increases the proportion of time spent in normoxaemia (SpO2 90%–96%) compared with usual care.
The Strategy to Avoid Excessive Oxygen using Autonomous Oxygen Titration Intervention trial is a multicentre, unblinded, parallel-group, randomised trial being conducted at four level 1 trauma centres in the USA. The trial compares an autonomous oxygen titration system versus usual care among 300 adults hospitalised for major trauma, burn, acute care surgery or acute respiratory illness. The primary outcome is the proportion of patient-time spent within the targeted normoxaemia range (SpO2 90%–96%) as measured by continuous non-invasive pulse oximetry, during the first 72 hours after randomisation. Secondary outcomes include the amount of supplemental oxygen administered and the proportion of time spent in hypoxaemia (SpO22 >96%). Specifying the protocol and statistical analysis plan before the conclusion of enrolment increases the rigour, reproducibility and interpretability of the trial. Enrolment began on 6 May 2024.
The trial protocol was approved by the single institutional review board at the University of Colorado School of Medicine and the Office of Human Research Oversight at the Department of Defense. We will present the results at scientific conferences and submit them for publication in a peer-reviewed journal.
The substantial case detection gap in the field of child tuberculosis (TB) disease is largely driven by inadequate diagnostic tools and approaches. Chest radiographs (CXRs) remain a key component in the evaluation of children and young adolescents (0–15 years) with presumptive TB, aiding clinicians in making the diagnosis and discriminating children with TB from those with other diseases. Widespread use and optimal interpretation of CXR is hampered by a lack of access to well-trained specialists to interpret images. Artificial intelligence CXR interpretation software, termed computer-aided detection (CAD), is now well developed for adults, yet few products have been evaluated in children. The CXR features of child TB are different from those of adults, and as a result, the performance of these CAD algorithms, largely developed for use in adults, will be suboptimal when used in children. Adapting, or fine-tuning adult CAD algorithms, using CXR images from children with presumptive TB, could allow optimisation of these products for use in children. We, therefore, set out to develop a large image and data repository collected from children evaluated for TB (called Catalysing Artificial Intelligence for Paediatric Tuberculosis Research, CAPTURE) with the purpose of evaluating current CAD products and then working with developers and other partners to optimise CAD algorithms for use in children.
We identified approximately 20 studies, from which potentially up to 11 000 CXRs could be used for the proposed project. CXRs and data were eligible for inclusion in the CAPTURE repository if collected from high-quality child TB diagnostic studies that enrolled children with presumptive TB and if CXRs were obtained as part of the baseline assessment. All lead investigators of these studies are members of the CAPTURE consortium. The images and metadata contributed are centrally collated and the key variable of TB case classification as confirmed, unconfirmed or unlikely TB, using an established consensus case definition, is available. All CXRs included in the CAPTURE repository have a consensus radiological interpretation allocated by a panel of independent expert child TB CXR readers who have classified them as ‘unreadable’, ‘normal’, ‘abnormal typical of TB’ or ‘abnormal not typical of TB’. To determine diagnostic performance of existing CAD products, we will evaluate these against a primary composite clinical reference standard (confirmed TB and unconfirmed TB vs unlikely TB), as well as other secondary microbiological and radiological reference standards. A subset of images will be subsequently allocated to a ‘training set’ and made available to developers, academic groups or other parties to either develop novel paediatric CAD products or fine-tune existing adult ones, which will then be re-evaluated by the CAPTURE team using an image subset (‘validation set’) that is independent of the training set.
The CAPTURE study has been approved by Stellenbosch University Health Research Ethics Committee (N22/09/113), with additional ethics approval or waivers by relevant local authorities obtained by consortium members contributing data if required. The final pooled, harmonised and cleaned dataset, as well as the deidentified, renamed CXR images, is stored on a secure cloud-based server. All analyses of existing CAD products, as well as the paediatric-optimised products, will be published in peer-reviewed publications and shared with other stakeholders like the WHO and donor and procurement organisations to guide policy updates and procurement pathways to ensure widespread uptake.
Patients and families from culturally and linguistically diverse (CALD) backgrounds face distinct challenges during end-of-life care (EOLC) in intensive care unit (ICU) settings, where communication, cultural expectations and decision-making may conflict with clinical norms. These complexities have important implications for intensive and palliative care teams.
To map literature on clinician, patient and family perspectives on end-of-life communication with CALD populations in ICUs, and identify barriers and facilitators to culturally responsive care.
This scoping review followed Joanna Briggs Institute methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The protocol was registered with the Open Science Framework and published in BMJ Open. Screening, review and data extraction were conducted by multiple reviewers using Covidence and the Joanna Briggs Institute tool, with findings synthesised through inductive thematic analysis.
The primary outcome was to identify barriers and facilitators to communication between clinicians, patients and families from CALD backgrounds during EOLC. Secondary outcomes were to map the scope of evidence, describe study characteristics and participant demographics, and summarise themes on cultural sensitivity, clinician awareness, family involvement, decision-making and integration of support services.
Thirty of 766 screened studies were included. Three themes emerged: communication challenges; cultural sensitivity and humility and decision-making and support. Barriers included limited access to palliative care, language discordance, underuse of interpreters, clinician discomfort and conflicting care expectations. Facilitators included structured meetings, inclusive practices and interdisciplinary collaboration.
Structural, communicative and cultural barriers undermine equitable EOLC for CALD patients. Embedding palliative care principles, cultural responsiveness and shared decision-making into ICU practice requires coordinated input from a multidisciplinary team involving physicians, nurses, social workers, spiritual care, psychologists and interpreters. System-level reforms in training, service delivery and research are needed to ensure person-centred care.
Registered with BMJ Open DOI: 10.1136/bmjopen-2024-090168
The primary objective of this clinical trial is to determine the clinical and cost-effectiveness of psychoeducation and emotional stabilisation (PES), together with eye movement desensitisation and reprocessing (EMDR) plus treatment-as-usual (TAU) in reducing symptoms of post-traumatic stress disorder (PTSD) among adults with intellectual disabilities compared with TAU. Secondary objectives include: (1) determining whether PES/EMDR plus TAU is superior to TAU in improving mental health problems and quality of life (QoL) among adults with intellectual disabilities who had a diagnosis of PTSD and (2) completing a process evaluation to examine intervention implementation and acceptability.
This is a two-arm parallel single-blind randomised controlled trial comparing PES-EMDR+TAU to TAU including an internal pilot phase. Outcome data will be captured prior to randomisation, and at 4 (after PES), 8 (after EMDR) and 14 months postrandomisation by masked assessors. 144 adults with intellectual disabilities with a diagnosis of PTSD will be allocated (1:1) randomly using minimisation from National Health Service (NHS) community and inpatients services for adults with intellectual disabilities in England. Participants are eligible to take part in this trial if: (1) they are aged 18 or older, but younger than 66, (2) have a Full Scale IQ
The primary outcome will be assessed using an intention-to-treat analysis. Baseline characteristics will be compared between arms to determine whether any potentially influential imbalance occurred. The primary outcome will be analysed by analysis of covariance, adjusting for baseline values of the outcome and any variables used in the randomisation process. Secondary outcomes will be analysed using linear or logistic regression models as appropriate reflecting the distribution of the outcome variable. The treatment effect will be estimated as an adjusted difference between sample means, presented with 95% CIs and p values. A complier average causal effect analysis will be considered should the data availability be sufficient to estimate the impact of non-compliance. A series of subgroup analyses on the primary outcomes will be considered considering differences in the Impact of Event Scale–Intellectual Disabilities scores at 14 months for (1) differing levels of general intellectual functioning and (2) PTSD versus complex PTSD.
This clinical trial was designed to allow for conclusions about whether PES/EMDR+TAU is efficacious in reducing symptoms of PTSD, relative to TAU, for adults with intellectual disabilities. A favourable ethical opinion has been received from an NHS ethics committee in the UK. The findings from this trial will be published within peer-reviewed journals and shared at national and international conferences. We will also aim to record and distribute podcasts detailing our findings together with our partners.
The MD Anderson Oropharynx Cancer (MDA-OPC) cohort is a unique single-institution, prospective longitudinal cancer cohort. The cohort aims to enhance the therapeutic index of OPC management by supporting data needs for independent investigators to conduct rigorous observational studies examining exposures and factors associated with acute and late toxicities, cancer progression, recurrence, new malignancies and quality of life in OPC survivors.
A total of 1811 patients with OPC with a minimum follow-up of 6 months have been consented to our prospective registry between 18 March 2015 and 29 December 2023. Clinical and treatment (Tx) data are available on all patients, including previously untreated patients (1443, 80%). Most previously untreated patients (97%) consented to longitudinal patient-reported outcomes and functional assessments for critical time points including pre-Tx, during-Tx and post-Tx at 3–6 months, 12 months, 18–24 months and annually up to 5 years.
The median age for the MDA-OPC cohort is 66 years (range, 25–96) with the majority being male (89%), white (92%) and with human papillomavirus (HPV)/p16-associated OPC (88%) primarily located in the tongue base or tonsil (90%). For previously untreated patients, 79% were diagnosed with stage I/II disease, and nearly half underwent curative intent chemoradiation. Overall survival was significantly higher for HPV/p16-associated OPC at 1 year (98% vs 93%) and 5 years (83% vs 54%; p
Future work includes expansion of the MDA-OPC cohort and survivorship surveillance to 10 years under the recently funded OPC-SURVIVOR research programme (P01CA285249), which aims to identify non-invasive, clinic-ready biomarkers and examine novel phenotypes and mechanistically matched mitigation strategies for latent OPC sequelae. Additionally, we aim to expand our advanced data infrastructure by integrating large data streams from parallel clinical trials and imaging registries.
by Oumarou I. Wone Adama, Iman Frédéric Youa, Alexandra Bitty-Anderson, Arnold Junior Sadio, Rogatien Comlan Atoun, Yao Rodion Konu, Hezouwe Tchade, Martin Kouame Tchankoni, Kokou Herbert Gounon, Kparakate Bouboune Kota-Mamah, Abissouwessim Egbare Tchade, Godonou Amivi Mawussi, Fiali Ayawa Lack, Fifonsi Adjidossi Gbeasor-Komlavi, Anoumou Claver Dagnra, Didier Koumavi Ekouevi
IntroductionIn Togo, the syndromic approach is used for the diagnosis and management of sexually transmitted infections (STIs). The aim of this study was to evaluate the syndromic approach for diagnosis of STIs among female sex workers (FSW) in Lomé, Togo.
MethodsA cross-sectional study was carried out from September to October 2023 among FSW in Lomé (Togo). FSW aged 18 years and above were included. A gynecological examination was performed for syndromic diagnosis, and the Xpert® CT/NG were used to screen vaginal swabs for Chlamydia trachomatis (CT) and Neisseria gonorrhoeae (NG). The performance (predictive values) of the syndromic approach to STI diagnosis was evaluated using the Xpert® CT/NG test as the gold standard.
ResultsA total of 357 FSW were recruited. The median age of FSW was 32 years (IQR: [26–40 years]) and 8.2% had attained a higher level of education. The prevalence of syndromic STI among FSW was 33.3%. Vaginal swabs were positive for CT (8.4%) and NG (8.7%), with a prevalence of bacterial STIs (CT and/or NG) of 14.3%. The syndromic approach to STI diagnosis demonstrated a positive predictive value of 24.3%.
ConclusionThe prevalence of STIs is relatively high among FSW in Lomé. According to this study, the diagnosis of STIs using the syndromic approach has limited relevance. National STI screening and management policies urgently need to be rethought, incorporating recent technological advances.
A key part of the patient safety system is how it responds to and learns from safety incidents. To date, there is limited research on understanding system-based approaches to investigating incidents that occur within this complex interacting system.
The aims of this study were to qualitatively explore mental health professionals’ perceptions of patient safety incident investigations; to understand the impact of the transition to systems-based approaches and to explore the influence of different elements of the system on the goals of patient safety.
The qualitative study involved 19 semi-structured interviews with professionals working within the patient safety system across two mental health National Health Service trusts. The data were analysed using thematic analysis.
Those interviewed identified that a change in approach to incident investigation, from root cause analysis to systems-based, would lead to rigorous investigations that are effectively linked to learning. Over time, this was described as a contributory factor to reducing feelings of blame and positively influencing safety culture. There were considerations of potential negative effects from a systems-based approach, such as the shifting rather than elimination of blame, and the possibility of missing individual poor practice. The findings identify the presence of several interdependencies across the system that could have a positive or negative influence on the outcomes of incident responses.
This study demonstrates that the interdependencies within the system and our limited understanding of safety in mental healthcare introduces complexity and uncertainty to incident investigation outcomes. This is likely to impact on safety incident responses and learning, where acknowledging and evaluating this complexity is likely to reduce any potential negative outcomes that exist.
Preventable hospital patient harm events disproportionally affect certain patient populations. For some, harm extends beyond physical injury to include cultural, emotional or spiritual impacts. While these disparities are linked to socio-demographics (eg, race, education), they are driven by structural factors (eg, procedures and policies). Patient safety monitoring systems (eg, incident reporting, patient concerns) were not originally designed to identify equity-related harms and may inadvertently obscure or reinforce the injustices they should address. This study will examine how equity is currently considered within hospital incident reporting and patient concerns systems across Canada and will identify opportunities to strengthen these systems’ responsiveness to inequities in patient safety.
This 3-year exploratory sequential mixed-method study began in September 2024. Phase one involves qualitative interviews with patient safety and equity leads, patients/families/caregivers and leaders of innovative initiatives to explore current practices, gaps and innovations in how equity-related factors are identified and addressed within incident reporting and patient concerns systems. Findings will inform Phase 2, a modified Delphi process with patient safety and equity experts and persons with lived experience of equity-related harm events to refine and reach consensus on key equity-promoting features, considerations and recommendations for these systems. In Phase 3, consensus items will be used to develop a national cross-sectional survey assessing the extent to which equity is integrated into hospital incident reporting and patient concerns systems in Canada. A patient advisory committee will inform data collection, interpretation of findings and dissemination.
Ethics approval has been received for Phase 1, with subsequent approvals to be sought for later phases. Dissemination plans include peer-reviewed publications, presentations at international conferences and knowledge exchange activities to inform patient engagement, the design of incident reporting and patient concerns systems and policy development.
TransformUs is a multicomponent school-based programme that offers teachers professional learning and resources aligned with the Australian curriculum to promote physically active teaching and learning, a supportive environment and physical activity opportunities during recess and lunch. The programme was originally developed for students in mainstream primary schools and has been proven efficacious for increasing physical activity and reducing sedentary behaviour in children without disability. The programme has been adapted for delivery with students with disabilities in primary and secondary schools (TransformUs All Abilities). This project aims to determine the implementation at scale and effectiveness of the TransformUs All Abilities programme to increase physical activity among primary and secondary school children and adolescents with disability. This protocol describes the hybrid implementation-effectiveness trial that will be used for this evaluation.
This study employs a hybrid type II implementation-effectiveness trial to evaluate the TransformUs All Abilities programme, targeting all government and independent, primary and secondary schools in Victoria, as well as special and mainstream secondary schools in Queensland and South Australia (n=2173 eligible schools). The effectiveness trial will focus on a subgroup of government/independent special schools for students with mild to moderate intellectual disability in Victoria, involving up to three intervention and three waitlist control schools (n=61 eligible schools). In both trials, outcomes will be guided by the RE-AIM framework focusing on reach, adoption and implementation (implementation trial) and effectiveness (effectiveness trial), with data collected at baseline and 6 months. The effectiveness trial will focus on students’ device-measured physical activity and sedentary behaviour—primary outcomes—and sleep, physical literacy and cognitive functions—secondary outcomes. Teacher feedback on the programme’s adaptation and their experience with programme implementation will also be collected, alongside qualitative feedback from a subsample of students regarding engagement/enjoyment and suggestions for improvements. Implementation data will be analysed descriptively and using linear mixed models to test changes over time. Effectiveness outcomes will be analysed using linear mixed models to compare intervention and waitlist control, accounting for confounding and school/classroom clustering. Interview data will be thematically analysed.
Ethical approval for this trial was obtained from the Deakin University Human Research Ethics Committee (2021-368). Clearance to conduct research in schools was also obtained from the Education Departments of Victoria (2023-004726), Queensland (550/27/2592) and South Australia (2022-0020). Informed consent is required for participation in the study. School staff can enrol in the implementation trial via the TransformUs website, while the effectiveness trial requires organisational, staff, parental/carer consent and student assent. Results will be disseminated through academic publications, scientific conference presentations and summary reports to schools, parents and partner organisations.
ACTRN12622001082796; Universal Trial Number: U1111-1281-1103; ACTRN12622001050741: U1111-1280-8828.
Genome Canada has committed significant resources to ensure that racialised groups are included in its initiatives; however, specific equity considerations related to engaging these communities in human genomic research continue to require deeper attention and exploration. This scoping review aims to widen the frame of analysis concerning inclusive human genomics by undertaking a synthesis that includes perspectives from genomicists, decision and policymakers, legal experts in bioethics and leaders from racialised communities.
We conducted a comprehensive scoping review using the Arksey and O’Malley framework to examine the equitable participation of racialised communities in human genomic research.
Our goal was to identify the barriers preventing these populations from equally participating in human genomic research. The review focused on studies from five countries: Canada, the USA, the UK, Australia and New Zealand which have similar immigration patterns and have received racialised populations from from some of the same communities around the globe. These features makes studying these particular countries germane to studying the common challenges they face in human genomics research.
Our scoping review examined both academic and grey literature, including MEDLINE, EMBASE, PsycINFO (inception to 11 June 2025), CINAHL (to 12 June 2025) and Cochrane Central Register of Controlled Trials (CENTRAL) (to 19 June 2025), as well as Google Scholar and OAISter (October, 2023).
Data were analysed using Braun and Clarke’s thematic synthesis guidelines. These included familiarisation with the relevant texts in the selected articles, generating initial codes using an inductive approach, reviewing potential themes and finalising the themes based on the consensus of the research team.
The study identified key barriers and facilitators to participation in human genomic research among racialised communities. The first theme (exclusion) highlighted obstacles such as a lack of transportation, limited knowledge of genetics and distrust stemming from concerns of stigmatisation and health disparities. The second theme (diversity of positions) described varied perceptions influenced by cultural values and motivations, with preferences for transparency and autonomy in research participation. Finally, the third theme (equity in genetic research) outlined the limited use of community-based participatory models and biobanking, underscoring the need for more inclusive and equitable research practices to fully engage racialised communities.
Future research should prioritise strategies of authentic engagement with racialised communities to enhance both inclusivity and equity in genetic, human genomic, precision medicine and precision health research.
Over 100 000 service users are admitted to acute mental health wards annually, many involuntarily. Wards are under incredible pressure due to high bed occupancy rates and staff shortages. In a recent survey, over 80% of mental health nurses reported experiencing aggression and violence within their role. National and international policy dictates that mental health ward staff manage incidents of aggression and violence using communication, known as de-escalation. However, de-escalation practice is variable, and there is little empirical evidence to underpin training. As such, there is still a reliance on more restrictive practices, including seclusion and physical restraint.
The aim of this study is to identify the communication and organisational factors that characterise effective management of service users’ behaviour and distress in acute adult inpatient mental health wards, reducing the reliance on more restrictive practices (eg, seclusion and restraint).
This observational study will be conducted on mental health wards in England. It will be comprised of three work packages (WPs).
A microanalysis of communication during de-escalation incidents from Body Worn Camera footage on wards (n=64), to identify staff communication practices that lead to effective management of service users’ distress. Ethnographic observations of ward routine practice, alongside interviews and questionnaires with staff and service users, to examine how challenging behaviour is anticipated, planned for and responded to on wards, and staff experiences and perceptions of this process. Triangulation of the findings from WPs 1 and 2 to examine the relationship between approaches to aggression management and staff communication, exploring the similarities and differences within and between wards.
Ethical approval for sites in England has been granted by the Wales Research Ethics Committee 3, REF 22/WA/0066. Findings will be disseminated through peer-reviewed journals, scientific conferences and service user and clinical networks.
The length and frequency of previous sickness absence (SA) spells have been shown to be associated with future SA. The aim was to examine if this pattern persisted during the COVID-19 pandemic among workers in retail and sales.
We used pseudonymised, individual-level data from three nationwide Swedish administrative registers to conduct a prospective cohort study.
Sweden.
All 306 933 blue-collar workers in retail and wholesale, aged 18–67 in Sweden in 2019.
Likelihood and length of SA.
We used a Negative Binomial Hurdle model to estimate incidence rate ratios (IRR) and odds ratios (ORs) to determine if SA patterns differed in 2020–2021 compared with 2018–2019. We examined how these patterns varied according to the length and frequency of SA in the preceding year. Only SA spells >14 days were included.
54 993 (18.5%) workers had SA during 2020–2021, an increase from 46 024 (15.6%) in 2018–2019. We observed a dose-response association between the number of prior SA days and the likelihood and length of future SA days, both before and during the pandemic. The likelihood of subsequent SA was higher in 2020–2021 compared with 2018–2019 among individuals with up to 180 prior SA days. Individuals with no prior SA had a lower average number of subsequent SA days during the pandemic (IRR (95% CI) 0.96 (0.94–0.98)) than in 2018–2019, while those with 1–30, 31–90 or 181–365 prior SA days had a higher average number of SA days during 2020–2021.
Individuals with many SA days prior to the pandemic were at particularly high risk of lengthy SA during the pandemic years.
Social drivers of health (SDOH), such as housing stability, food security and access to transportation, profoundly influence both healthcare access and health outcomes. In pregnancy, screening positively for SDOH domains correlates with poorer perinatal outcomes. While the American college of Obstetricians and Gynaecologists recommends screening for SDOH at every routine prenatal visit, many prenatal practices struggle to systematically screen patients for SDOH. This study evaluates the implementation of a universal SDOH screening and management protocol in prenatal care and aims to bridge the gap between the recommendation for universal SDOH screening in prenatal care and its actual integration by evaluating implementation strategies that can serve as a guide for other prenatal care clinics.
This multi-site, prospective formative implementation evaluation will assess the integration of standardised SDOH screening and management into prenatal care workflows at four prenatal clinic sites within an academic Obstetrics and Gynaecology department. The study employs a concurrent triangulation mixed-methods approach integrating chart-abstracted patient data, staff surveys, and staff and patient semi-structured interviews, guided by established implementation science frameworks (exploration, preparation, implementation and sustainment, consolidated framework for implementation research and implementation outcomes framework). Key implementation strategies include workflow integration, electronic medical record optimisation, role clarification and comprehensive training. Implementation outcomes to be evaluated include feasibility, acceptability, appropriateness, adoption, fidelity and sustainability.
This study was approved by the University of North Carolina at Chapel Hill’s Institutional Review Board (IRB #24-3104). Verbal informed consent will be obtained from all interview participants, and consent will be embedded in staff surveys. Results will be disseminated through peer-reviewed publications, conference presentations, stakeholder meetings and directly to participating clinical sites.
Cultural safety is critical to addressing healthcare disparities for Aboriginal and Torres Strait Islander peoples. The Deadly Aboriginal and Torres Strait Islander Nursing and Midwifery Mentoring (DANMM) programme was developed to support Aboriginal and Torres Strait Islander Nurses and Midwives through culturally responsive mentorship. This pilot study evaluates the feasibility and acceptability of the DANMM programme and its impact on cultural safety knowledge and workplace experiences.
A mixed-methods exploratory study research design was employed. Data collection methods were underpinned by the Ngaa-bi-nya evaluation framework.
Four Local Health Districts in New South Wales, Australia.
20 participants completed the Ganngaleh nga Yagaleh (GY) cultural safety tool (n=12 pre-DANMM programme and n=8 post-DANMM programme), between June 2023 and October 2024. Five of these participants also took part in individual yarns between August and November 2024.
Changes in median cultural safety knowledge scores (pre- to post-programme), measured using the GY tool, were analysed using the Wilcoxon rank-sum test for unpaired data (p
Statistically significant positive changes in median GY tool scores (pre to post) were observed for item 13 (median pre=4.5, post=5.0; p=0.02), item 32 (median pre=4.0, post=5.0; p=0.03) and item 40 (median pre=3.5, post=5.0; p=0.03); with a statistically significant negative change in scores observed for item 6 (median pre=3.0, post=2.0; p=0.01). Qualitative themes included: (1) fostering growth and navigating barriers, (2) the power of connection and (3) navigating prejudice and racism in the workplace. Participants valued the mentorship model, though programme participation was affected by organisational barriers, including time constraints and a lack of managerial support.
The DANMM programme was found to be acceptable and feasible with evidence of enhanced cultural safety knowledge and mentorship benefits. However, the findings highlight the enduring impacts of colonial and cultural load and the need for greater organisational support to ensure the successful implementation and long-term sustainability of cultural safety initiatives. Future research should examine the longer-term effects on workforce retention and overcoming barriers to implementation and scalability.
Chronic tic disorders (CTDs)—such as Tourette Syndrome (TS)—are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population.
Informed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups. Reflexive thematic analysis was used to analyse the data.
Participants were recruited via online support groups, social media and research registers.
Seven focus groups were held separately with young people with tics (n=2), adults with tics (n=10) and parents/guardians of children with tics (n=11), led by a lived experience expert (coauthor PS) and facilitated by researchers. Discussion focused on three areas: the impact of living with tics, experience accessing healthcare for tics and management of tics.
Five themes were developed highlighting challenges across the healthcare pathway, including gaining a diagnosis, and receiving treatment, resulting in the use of self-support methods to reduce tic expression or the impact of tics. Themes also illustrated perceptions that healthcare provider's knowledge impacted initial interactions with the healthcare system, and how healthcare systems were not felt to be prioritising CTDs.
The findings highlight a lack of prioritisation for tic disorders compounded by a healthcare structure which does not support a complex condition that requires a multidisciplinary approach. This research calls for improvements to UK healthcare services for CTD.