Using a participatory approach to encourage uptake of breast, colorectal, and cervical cancer screening for Scottish Muslim women: a pilot qualitative study.

BACKGROUND: Muslim women use cancer screening less often than the general female population, which puts them at risk of delayed detection. We used an asset-based approach to co-design a faith-based intervention to increase uptake of breast, colorectal, and cervical screening in Scottish Muslim women. METHODS: In this pilot qualitative study, we recruited Muslim women (n=28) of Asian and Arab ethnicity, aged 25-74 years, through snowball sampling from community organisations in Glasgow and Edinburgh. Ten of these women participated in four online workshops in February, 2021, with the aim to codesign the intervention, underpinned by the socio-ecological model and the behaviour change wheel. The final intervention included health education delivered by doctors, testimonials by Muslim women sharing experiences of cancer or screening, and the perspective on cancer screening from a female religious scholar. The intervention was delivered to two groups of eight and ten Muslim women respectively, in March 2021. A week later, the 18 women participated in two focus groups to qualitatively evaluate the intervention. Analyses were conducted thematically. FINDINGS: Themes included barriers to screening, acceptability of content and delivery, attitudinal change, and intervention improvement. Participants believed that lack of awareness was an important barrier to screening. They found the intervention informative. They particularly liked the combination of multiple components, including spirituality, culture, and health education. They valued the faith-based element and highlighted how Islam could facilitate overcoming cultural barriers including social stigma, embarrassment, and modesty, although this could vary with different levels of religiosity. Participants also emphasised that faith-based approaches in isolation would not be enough. They appreciated input of trusted sources such as doctors and religious scholars and were especially drawn to personal narratives. Participants expressed preference for face-to-face delivery and advised using translators to overcome language barriers. INTERPRETATION: Barriers to screening are complex. Using faith as an asset, integrated with the socio-ecological model and behaviour change wheel, resulted in a holistic intervention tackling multiple barriers, which appealed to participants. Collaborating with communities and faith leaders can help to develop culturally sensitive interventions that harness positive aspects of faith for better health outcomes. Intervention effectiveness needs more robust investigation, which we are undertaking in a feasibility study with 200 Muslim women in northeast England and Scotland. FUNDING: Scottish Inequalities Fund, the Scottish Government.

Validation of an Arabic version of the female version of The Sexual Dysfunctional Beliefs Questionnaire: a factor analysis study.

Several questionnaires have been developed to evaluate female sexual dysfunction (FSD) and sexual health problems. However, there is a lack of validated versions of these questionnaires in Arabic. One of the most used instruments is the female version of The Sexual Dysfunctional Beliefs Questionnaire (SDBQ). The current study aimed to validate an Arabic version of the SDBQ. The Arabic version of SDBQ-Female was incorporated into an online questionnaire using and distributed among Jordanian Facebook groups and women-only groups. Factor analysis was performed to investigate evidence for the validity of the questionnaire. 530 females (mean age 30 years, SD = 9) completed the questionnaire. Principal component analysis produced the final model composed of 24 items distributed across four factors: Sexual Desire & Pleasure, Affection Primacy, Sexual Conservatism and Age-Related Beliefs. Confirmatory factor analysis was conducted, and fit indices were acceptable (CMIN/DF = 2.52, GFI = 0.91, AGFI = 0.89, CFI = 0.90, SRMR = 0.05 and RMSEA = 0.05). Income level and marital status both influenced FSD beliefs, with higher scores associated with higher income and being single. The Arabic version of the SDBQ-female demonstrated evidence of validity and reliability. Additional research is necessary to explore beliefs related to FSD within an Arabic context.

This study provides evidence for the validity and reliability of an Arabic questionnaire for assessing female sexual dysfunction (FSD) among Jordanian women recruited through Facebook. Women's income level and marital status influenced their FSD beliefs. Further research is needed to explore these beliefs in an Arabic context.

Correlation of vitamin D receptor genotypes, specific IgE levels and other variables with asthma control in children.

INTRODUCTION: Asthma is a common condition affecting millions of children globally. The main goal of this study is to assess factors related to asthma management, particularly atopy level and the impact of genetic variants of the vitamin D receptor (VDR) gene. METHODS: Asthmatic children were enrolled in an outpatient respiratory clinic. Information on patients' medication adherence, medical and medication factors, and sociodemographic were gathered. Spirometry FEV1% and FVC% measurements, and the asthma control test were used to evaluate the severity of asthma, and genotyping of the VDR gene and radioallergosorbent test (RAST) were conducted. Regression analyses were conducted to evaluate variables associated with asthma control and spirometry measures. RESULTS: A total of 313 participants (67.4% males) were recruited in the current study. The mean age was 9.37 (±3.45) years. The mean score for adherence was 4.26 (±2.52), and only 46% of the participants had controlled asthma. Forward conditional stepwise binary regression showed that low and moderate Inhaled corticosteroids (ICS) dose (OR= 0.42 (95% CI 0.20-0.90), p = 0.026; OR = 0.371 (95% CI 0.2-0.72), p = 0.003, respectively) decreased the odds of being in the controlled asthma group, while higher inhaler score (OR = 2.75 (95% CI 2.17-3.49, p < 0.001)) increased the odds of being in the controlled asthma group. However, results found no association between VDR genotype and asthma control, spirometry values or hospitalization due to asthma. CONCLUSIONS: The results indicated that many of the asthma patients had poorly controlled asthma. Factors that were associated with poor asthma control included poor inhaler technique.

The future of clinical trials-is it virtual?

INTRODUCTION: Participant recruitment to clinical trials is often sub-optimal. Decentralized clinical trials have the potential to address challenges in traditional site-based clinical trial recruitment. SOURCES OF DATA: This review is based on recently published literature and the experience of running a large industry-sponsored interventional trial using both traditional and decentralized methods. AREAS OF AGREEMENT: Efficient delivery of clinical trials is essential to continue to provide therapeutic improvements in a timely and cost-efficient way. Clinical trial designs are constantly evolving to achieve effective trial delivery, manage the complexity of new therapeutic algorithms and conform to cultural developments. AREAS OF CONTROVERSY: Digitally innovative decentralized clinical trials may be a solution to improve recruitment and retention. Although many trials incorporate digital innovations to reduce patient burden, decentralized clinical trials allow remote access to clinical research, potentially enhancing geographical diversity as well as reducing participant burden. GROWING POINTS: Areas for development currently being discussed are developing a 'recruitment platform' that exploits the reach of digital connectivity, automated identification of eligible participants from volunteers, employing technology for remote interaction and exploring the logistic process of delivering the interventions. AREAS TIMELY FOR RELEVANT RESEARCH: The focus of development must ensure that the overall impact will widen participation and reduce inequalities in healthcare.

Multifaceted Quality Improvement Interventions to Prevent Hemodialysis Catheter-Related Bloodstream Infections: A Systematic Review.

RATIONALE & OBJECTIVE: Central venous catheters (CVCs) are widely used for hemodialysis but are prone to burdensome and costly bloodstream infections. We determined whether multifaceted quality improvement interventions in hemodialysis units can prevent hemodialysis catheter-related bloodstream infections (HDCRBSI). STUDY DESIGN: Systematic review. SETTING & STUDY POPULATIONS: PubMed, EMBASE, and CENTRAL were searched from inception to April 23, 2022, to identify randomized trials, time-series analyses, and before-after studies that examined the effect of multifaceted quality improvement interventions on the incidence of HDCRBSI or access-related bloodstream infections (ARBSI) among people receiving hemodialysis outside of the intensive care unit (ICU). DATA EXTRACTION: Two people independently extracted data and assessed the risk of bias and quality of evidence using validated tools. ANALYTICAL APPROACH: Intervention effects, validity, and characteristics of studies with the same design were compared. Differences between study designs were described. RESULTS: We included 21 studies from 8,824 identified by our search. Among 15 studies that measured HDCRBSI, 2 methodologically heterogenous cluster randomized trials reported discordant intervention effects, 2 interrupted time-series analyses reported favorable interventions with discordant patterns of effect, and 11 before-after studies reported favorable interventions with a very high risk of bias. Among 6 studies that only measured ARBSI, 1 time-series analysis and 1 before-after study did not find a favorable intervention effect, and 4 before-after studies reported a favorable effect with a very high risk of bias. The overall quality of evidence was low for HDCRBSI and very low for ARBSI. LIMITATIONS: Nine definitions of HDCRBSI were used. Ten studies included hospital-based and satellite facilities but did not report separate intervention effects for each type of facility. CONCLUSIONS: Multifaceted quality improvement interventions may prevent HDCRBSI outside the ICU. However, evidence supporting them is of low quality, and further carefully conducted studies are warranted. REGISTRATION: Registered at PROSPERO with registration number CRD42021252290. PLAIN-LANGUAGE SUMMARY: People with kidney failure rely on central venous catheters to facilitate life-sustaining hemodialysis treatments. Unfortunately, hemodialysis catheters are a common source of problematic bloodstream infections. Quality improvement programs have effectively prevented catheter-related infections in intensive care units, but it is unclear whether they can be adapted to patients using hemodialysis catheters in the community. In a systematic review that included 21 studies, we found that most quality improvement programs were reported to be successful. However, the findings were mixed among higher-quality studies, and overall the quality of evidence was low. Ongoing quality improvement programs should be complemented by more high-quality research.

Loss of TDP-43 splicing repression occurs early in the aging population and is associated with Alzheimer's disease neuropathologic changes and cognitive decline.

LATE-NC, the neuropathologic changes of limbic-predominant age-related TAR DNA-binding protein 43 kDa (TDP-43) encephalopathy are frequently associated with Alzheimer's disease (AD) and cognitive impairment in older adults. The association of TDP-43 proteinopathy with AD neuropathologic changes (ADNC) and its impact on specific cognitive domains are not fully understood and whether loss of TDP-43 function occurs early in the aging brain remains unknown. Here, using a large set of autopsies from the Baltimore Longitudinal Study of Aging (BLSA) and another younger cohort, we were able to study brains from subjects 21-109 years of age. Examination of these brains show that loss of TDP-43 splicing repression, as judged by TDP-43 nuclear clearance and expression of a cryptic exon in HDGFL2, first occurs during the 6th decade, preceding by a decade the appearance of TDP-43+ neuronal cytoplasmic inclusions (NCIs). We corroborated this observation using a monoclonal antibody to demonstrate a cryptic exon-encoded neoepitope within HDGFL2 in neurons exhibiting nuclear clearance of TDP-43. TDP-43 nuclear clearance is associated with increased burden of tau pathology. Age at death, female sex, high CERAD neuritic plaque score, and high Braak neurofibrillary stage significantly increase the odds of LATE-NC. Faster rates of cognitive decline on verbal memory (California Verbal Learning Test immediate recall), visuospatial ability (Card Rotations Test), mental status (MMSE) and semantic fluency (Category Fluency Test) were associated with LATE-NC. Notably, the effects of LATE-NC on verbal memory and visuospatial ability are independent of ADNC. However, the effects of TDP-43 nuclear clearance in absence of NCI on the longitudinal trajectories and levels of cognitive measures are not significant. These results establish that loss of TDP-43 splicing repression is an early event occurring in the aging population during the development of TDP-43 proteinopathy and is associated with increased tau pathology. Furthermore, LATE-NC correlates with high levels of ADNC but also has an impact on specific memory and visuospatial functions in aging that is independent of AD.

Exploring the health care experiences of women diagnosed with vulvodynia.

BACKGROUND: Although seeking diagnosis and treatment for chronic pain should be straightforward, this is not typically the case for those living with vulvodynia, who often describe it as a battle, frequently involving misdiagnosis, dismissal, and gender-based discrimination. AIM: This study explored the health care experiences of women living with vulvodynia in the United Kingdom. METHODS: As they are less explored in literature, experiences postdiagnosis and across varying health care settings were specifically considered. Interviews were conducted with 6 women aged 21 to 30 years to explore their experiences when seeking help for vulvodynia. OUTCOMES: Through interpretative phenomenological analysis, 5 themes emerged: the impact of diagnosis, patients' perception of health care, self-guidance and lack of direction, gender as a barrier to effective care, and a lack of consideration of psychological factors. RESULTS: Women often experienced difficulties before and after diagnosis, and many felt that their pain was dismissed and ignored due to their gender. Pain management was felt to be prioritized by health care professionals over well-being and mental health. CLINICAL IMPLICATIONS: There is a need for further exploration of gender-based discrimination experiences among patients with vulvodynia, health care professionals' perceptions of their capabilities in working with such patients, and the impact of improving professionals' training in working with these patients2. STRENGTHS AND LIMITATIONS: Health care experiences after diagnosis are rarely examined within literature, with studies predominantly focusing on experiences surrounding diagnosis, intimate relationships, and specific interventions. The present study provides an in-depth exploration of health care experiences through participants' lived experiences and gives insight into an underresearched area. Women with negative experiences of health care may have been more likely to participate than those with positive experiences, which may have resulted in their overrepresentation. Furthermore, participants were predominantly young White heterosexual women, and almost all had comorbidities, further limiting generalizability. CONCLUSION: Findings should be used to inform health care professionals' education and training to improve outcomes for those seeking care for vulvodynia.

Variables associated with asthma control among adult patients.

Objective: Asthma is one of the most prevalent chronic diseases with a substantial impact on the health status of affected patients. Further research is necessary to identify factors contributing to poor asthma control. The current study aimed to investigate the factors associated with poor asthma control among adult asthmatic patients.Methods: In this case-control study, the Asthma Control Test (ACT) was translated into Arabic and distributed to adults with asthma attending two hospitals in Jordan to evaluate the degree of asthma control. The following variables were collected for each patient: sociodemographic information, comorbidities, appropriate use of inhaler technique, spirometric measurements, and medications use. Binary regression was used to evaluate factors associated with asthma control.Results: A total of 314 participants with a mean age of 51.47 years (±16.37) completed the study. ACT score had a mean of 16.68 (±4.86). The majority of asthmatic patients had insufficiently controlled asthma (64.6%). Binary regression results showed that previous respiratory infection history (p = 0.014, OR = 0.473 (95%CI 0.261-0.857)), higher exposure to irritants (p = 0.010, OR = 0.747 (95%CI 0.598-0.933)) decreased the odds of being in the controlled asthma group. Patients receiving inhaled corticosteroids (ICS) had higher odds of being in the controlled asthma group (p = 0.039, OR = 2.372 (95%CI 1.043-5.392)).Conclusions: The majority of asthma patients had insufficiently managed disease. The main factors that contributed to poor asthma control were respiratory infection history, increased exposure to asthma symptoms triggers, and ICS nonuse.

Evaluating the effects of a multicomponent support service for people recently diagnosed with dementia and their carers: A qualitative study.

INTRODUCTION: Although prior research has provided an understanding of the needs of people living with dementia (PLWD) and their carers, less is known about how tailored multicomponent interventions impact their lives. This study explored the effect of providing ongoing support to people who had been recently diagnosed with dementia and to their carers. METHODS: We conducted interviews with a convenience sample of key stakeholders: 11 interviews with people who had dementia and their familial carers (n = 14) and six interviews with staff and other practitioners involved with the service (n = 13). Inductive thematic analysis was performed on the data. RESULTS: Four themes were developed: the service as a source of respite, peer support, activities as facilitators of emotional wellbeing, and social support. The service was well-respected, credible, and trusted and was highly valued by practitioners, clients, and carers. It had a clear role in supporting PLWD and their carers. Peer support provided through the service contributed to greatly reducing self-reported carer burden. CONCLUSION: Recommendations arising from this study include offering holistic services to PLWD and their carers, developing activities for men, raising awareness of services among practitioners working with PLWD, and improving partnerships between services and agencies working with older people. PATIENT OR PUBLIC CONTRIBUTION: Service users were consulted on the themes generated from the data and were asked to provide feedback to help guide the interpretation of the data and ensure this reflected their views and experiences.

Evaluation of real-time monitored ozone concentration from Abuja, Nigeria.

Real-time ozone (O3) concentration is vital for accurate analysis of O3 to inform the public about O3 concentrations that may have an adverse effect on health. Few studies have analysed air pollution in Abuja, Nigeria and non on real-time ozone concentrations. As a result, there is a scarcity of data and information on real-time ozone pollution, pointing to a gap that needs to be urgently closed to enable a better understanding of ozone pollution and the causes and consequences in terms of the associated health risks.In this study, -time concentrations of ground-level ozone were measured in a busy urban pollution monitoring station. Using a real-time ozone monitor to enable real-time monitoring of O3 concentration of ozone for the first time in Abuja. The ozone concentrations followed a clear pattern with high concentrations being recorded during the dry (harmattan) season. Concentrations higher than the WHO standard of (eight-hour averaged) 100 µg/m3, occurred on 53 days over the 5-month dry season. Of those 53 days, 18 had ozone concentrations greater than 200 µg/m3. Daily patterns showed a rise throughout the day, reaching a peak in the evening. Weekday/weekend differences were less pronounced than those found in other studies. High temperatures and local climatic conditions in Abuja encourage the formation of ozone. In this study, we confirm the concentration of ozone, and the pattern can be episodic and potentially damaging to health. There is a need for better regulation and measures to reduce ozone, particularly when local climatic conditions, such as harmattan, favour the development of photochemical smog in such settings.

You clapped, you cheered, but did anybody hear? A mixed-methods systematic review of dementia homecare workers' training and psychosocial needs.

The homecare sector's high turnover rate is linked to poor working conditions and a lack of person-centered practice. Limited research exists on the training and psychosocial needs of homecare workers caring for people living with dementia (PLWD). This systematic review explored these needs and identified 285 studies, of which seven studies met the inclusion criteria. A narrative synthesis identified four themes: "training and education challenges and facilitators;" "social isolation and the importance of peer support;" "emotional attachments and distress experienced by homecare workers;" and "working with families and its emotional impact on homecare workers." This review highlights the unmet educational and psychosocial needs of homecare workers and the negative impacts these unmet needs have. To improve person-centered practice in homecare, workers require dementia-specific training, and concurrent emotional and peer support, alongside support managing relationships with clients' families. Future research is required to implement an intervention to meet these needs.

Assessing the validity and reliability of the Arabic versions of Mini Asthma Quality of life questionnaire and Asthma Control Test in adult patients with asthma: A factor analysis study.

Background and objective: Asthma is a common disease that has a significant influence on patients' quality of life. Although Arabic tools for assessing symptom control and quality of life in individuals with asthma are available, no sufficient studies have evaluated the validity of these tools. Therefore, the aim of the current study was to validate the Arabic version of these tools. Methods: Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were conducted on the Arabic versions of the Asthma Control Test (ACT) and Mini Asthma Quality of Life Questionnaire (Mini AQLQ). Results: A total of 314 participants (70.1 % females) were enrolled in the current study. The mean age of the participants was 51.47 (±16.37). EFA suggested a three-factor model for Mini AQLQ and a one-factor model for ACT, which was confirmed by CFA analyses. High correlations were found between spirometric values and ACT and Mini AQLQ scores, indicating good concurrent validity. The area under the curve produced by the Roc curve was 0.861 (p < 0.001), and the most suitable cut-off point was 4.741. Conclusion: All analyses conducted showed that the Arabic versions of both Mini AQLQ and ACT are reliable and valid and can be administered to adults with asthma. The application of these validated instruments will improve the management and diagnosis of asthma in Arab countries.

Effectiveness of inactivated SARS-CoV-2 vaccine (CoronaVac) on intensive care unit survival.

This study compared the course of coronavirus disease 2019 (COVID-19) in vaccinated and unvaccinated patients admitted to an intensive care unit (ICU) and evaluated the effect of vaccination with CoronaVac on admission to ICU. Patients admitted to ICU due to COVID-19 between 1 April 2021 and 15 May 2021 were enrolled to the study. Clinical, laboratory, radiological parameters, hospital and ICU mortality were compared between vaccinated patients and eligible but unvaccinated patients. Patients over 65 years old were the target population of the study due to the national vaccination schedule. Data from 90 patients were evaluated. Of these, 36 (40.0%) were vaccinated. All patients had the CoronaVac vaccine. Lactate dehydrogenase and ferritin levels were higher in an unvaccinated group than vaccinated group (P = 0.021 and 0.008, respectively). SpO2 from the first arterial blood gas at ICU was 83.71 ± 19.50% in vaccinated, 92.36 ± 6.59% in unvaccinated patients (P = 0.003). Length of ICU and hospital stay were not different (P = 0.204, 0.092, respectively). ICU and hospital mortality were similar between groups (P = 0.11 and 0.70, respectively). CoronaVac vaccine had no effect on survival from COVID-19. CoronaVac's protective effect, especially on new genetic variants, should be investigated further.

Solid pancreas transplant outcomes with increased donor and recipient ages compared with reference ages: a systematic review.

BACKGROUND: Increased recipient and donor age are associated with worse solid organ pancreas transplant outcomes. However, donor and recipient age criteria vary between jurisdictions. We systematically reviewed studies reporting the association between transplanting older recipients and donors beyond current Transplantation Society of Australia and New Zealand (TSANZ) limits with solid pancreas transplant outcomes. AIMS: To review current outcomes of solid pancreas transplantation in recipients and donors over the TSANZ reference ages. METHODS: Studies comparing transplant outcomes between a reference-age and an older-age donor (>45 years) or recipient (≥50 years) cohort for solid pancreas transplantation were included. Primary outcomes were pancreas/kidney graft and patient survival at 1 and 5 years. Secondary outcomes were post-transplant complications (graft thrombosis, acute rejection and relaparotomy rates). RESULTS: Eleven studies were included (two studies assessing solid pancreas outcomes between older vs reference-aged donors and nine studies assessing outcomes between older vs reference-aged recipients). Seven of 11 studies were judged to be at high risk of bias. Primary and secondary outcomes were not significantly different between recipient age groups in nine studies. A sensitivity analysis of older versus reference-aged studies excluding studies at high risk of bias also showed non-inferior primary and secondary outcomes at 1 year. Two studies comparing outcomes by donor age showed worse graft survival but non-inferior patient survival with older donors. CONCLUSION: Increased donor or recipient age alone should not absolutely contraindicate solid pancreas transplantation, especially if other risk predictors are minimised.

Impact of the third national 'Be Clear on Cancer' Breast Cancer in Women over 70 Campaign on general practitioner attendance and referral, diagnosis rates and prevalence awareness.

OBJECTIVE: More than a third of women diagnosed with breast cancer in England, and over half of those who die from it, are over 70. The Be Clear on Cancer Breast Cancer in Women over 70 Campaign, running three times, 2014-2018, aimed to promote early diagnosis of breast cancer in England by raising symptom awareness and encouraging women to see their general practitioner (GP) without delay. We sought to establish whether the third campaign had successfully met its aims. METHODS: Metrics covering the patient pathway, including symptom awareness, attending a GP practice with symptoms, urgent GP referral, diagnosis and stage of cancer, were assessed using national cancer databases and two household surveys. RESULTS: The third campaign was associated with an increase in urgent cancer referrals, and therefore mammograms and ultrasounds performed. This was associated with an increase in breast cancers diagnosed. There was a delayed effect on GP attendances. Awareness of breast cancer prevalence for the 70-and-over age group improved. Impact on these metrics diminished across successive campaigns. CONCLUSIONS: Future campaigns should focus on harder-to-reach women and include GPs as targets as this campaign showed a potential to affect referral behaviour.

Risk indices predicting graft use, graft and patient survival in solid pancreas transplantation: a systematic review.

BACKGROUND: Risk indices such as the pancreas donor risk index (PDRI) and pre-procurement pancreas allocation suitability score (P-PASS) are utilised in solid pancreas transplantation however no review has compared all derived and validated indices in this field. We systematically reviewed all risk indices in solid pancreas transplantation to compare their predictive ability for transplant outcomes. METHODS: Medline Plus, Embase and the Cochrane Library were searched for studies deriving and externally validating risk indices in solid pancreas transplantation for the outcomes of pancreas and patient survival and donor pancreas acceptance for transplantation. Results were analysed descriptively due to limited reporting of discrimination and calibration metrics required to assess model performance. RESULTS: From 25 included studies, discrimination and calibration metrics were only reported in 88% and 38% of derivation studies (n = 8) and in 25% and 25% of external validation studies (n = 12) respectively. 21 risk indices were derived with mild to moderate ability to predict risk (C-statistics 0.52-0.78). Donor age, donor body mass index (BMI) and donor gender were the commonest covariates within derived risk indices. Only PDRI and P-PASS were subsequently externally validated, with variable association with post-transplant outcomes. P-PASS was not associated with pancreas graft survival. CONCLUSION: Most of the risk indices derived for use in solid pancreas transplantation were not externally validated (90%). PDRI and P-PASS are the only risk indices externally validated for solid pancreas transplantation, and when validated without reclassification measures, are associated with 1-year pancreas graft survival and donor pancreas acceptance respectively. Future risk indices incorporating recipient and other covariates alongside donor risk factors may have improved predictive ability for solid pancreas transplant outcomes.

The connected patient project: moving towards a population-based primary health care research registry.

BACKGROUND: The NHS pledges to give all patients access to clinical research. In England, 32% of General Practices are research active and only 14% of patients engage in research. This project aimed to evaluate consent-for-contact and communication in primary care patients. METHODS: An explanatory mixed methods study of patients and staff within a single general practice. The study included all patients over the age of 18 years, and excluded those on the palliative care register and those unable to give informed consent. The questionnaire asked recipients to indicate their preferred contact method and data-sharing permissions with three organisations: NHS, Universities and Commercial Companies. Survey recipients and staff were invited to take part in a semi-structured interview. Interviews explored project acceptability, feasibility and reasoning behind choices made. Statistical data were triangulated with interview data. RESULTS: The target patient population was 4678, 24% (n = 1148) responded. Seven hundred and three gave permission for at least one of the organisations to contact them. Older people were more likely to respond than young people, (p < 0.001). There was a trend for more women than men to give permissions however, in the 70 years plus age group this was reversed. Short message service was the preferred method of communication (48% n = 330), but those aged 70 years and over, preferred letter (p = 0.001). Interviews suggested patients felt the project was primarily about improving communication and secondly access to research. Patients trusted the NHS and university researchers. Staff interviewees found the project was less onerous than expected. Barriers to wider rollout included workload and the fragmented nature of NHS digital systems. CONCLUSIONS: A registry of patients was established; however, the response rate of 24% needs increasing before wider adoption. Health promotion and chronic disease-based research may recruit better when based in primary health care. Older demographics would be more likely to volunteer for research. NHS and academic researchers are trusted, commercial organisations less so. The move to digitalise communication methods has the potential to marginalise older women. Findings were used to drive forward two novel developments: a consent registry (Research+Me) and a federation-wide participant identification process.

Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life.

BACKGROUND: Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers. METHODS: Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken. RESULTS: Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers. CONCLUSION: Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as 'critical noticers', trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.

Quantifying paediatric intensive care unit staffing levels at a paediatric academic medical centre: A mixed-methods approach.

AIM: To identify, simulate and evaluate the formal and informal patient-level and unit-level factors that nurse managers use to determine the number of nurses for each shift. BACKGROUND: Nurse staffing schedules are commonly set based on metrics such as midnight census that do not account for seasonality or midday turnover, resulting in last-minute adjustments or inappropriate staffing levels. METHODS: Staffing schedules at a paediatric intensive care unit (PICU) were simulated based on nurse-to-patient assignment rules from interviews with nursing management. Multivariate regression modelled the discrepancies between scheduled and historical staffing levels and constructed rules to reduce these discrepancies. The primary outcome was the median difference between simulated and historical staffing levels. RESULTS: Nurse-to-patient ratios underestimated staffing by a median of 1.5 nurses per shift. Multivariate regression identified patient turnover as the primary factor accounting for this difference and subgroup analysis revealed that patient age and weight were also important. New rules reduced the difference to a median of 0.07 nurses per shift. CONCLUSION: Measurable, predictable indicators of patient acuity and historical trends may allow for schedules that better match demand. IMPLICATIONS FOR NURSING MANAGEMENT: Data-driven methods can quantify what drives unit demand and generate nurse schedules that require fewer last-minute adjustments.

HnRNP L represses cryptic exons.

The fidelity of RNA splicing is regulated by a network of splicing enhancers and repressors, although the rules that govern this process are not yet fully understood. One mechanism that contributes to splicing fidelity is the repression of nonconserved cryptic exons by splicing factors that recognize dinucleotide repeats. We previously identified that TDP-43 and PTBP1/PTBP2 are capable of repressing cryptic exons utilizing UG and CU repeats, respectively. Here we demonstrate that hnRNP L (HNRNPL) also represses cryptic exons by utilizing exonic CA repeats, particularly near the 5'SS. We hypothesize that hnRNP L regulates CA repeat repression for both cryptic exon repression and developmental processes such as T cell differentiation.