National Health Service Research Articles

A service evaluation assessing the root canal referral and treatment pathway within the Royal London Dental Hospital.

Aim Within the National Health Service (NHS) England, dental hospitals are tasked with assessing and managing complex root canal treatments (RCTs) referred from various service providers. The aim of this service evaluation was to investigate the root canal treatment and retreatment (RCreT) output, case complexity designation and referral pathways to the Royal London Dental Hospital.Methods Data were collected and analysed on non-surgical RCTs completed between 1 April 2021 to 31 March 2022, including the number of completed treatments, reason and origin of referrals, referral-to-treatment timelines and complexity of treatments.Results In total, 339 teeth met the inclusion criteria, with external referrals (n = 198) taking an average of 47 weeks from referral to treatment commencement compared to 16 weeks for internal referrals (n = 141). Maxillary incisors and first permanent molars were most commonly referred, with anatomical challenges (33.5%), RCreT (32.2%) and trauma (18%) being the most common reasons. Treatment was completed within an average of 2.7 appointments, with a high proportion of complexity Level 2 and 3 cases being completed.Conclusions The RCT output was shown to be increasing within the service. External referrals are taking longer to be seen and treated compared to NHS targets and internally referred patients; although, further information is needed to understand the exact cause of this. Allocation of treatment complexity appeared to be in line with the clinician's skill set and experience level, taking an average of 2.7 appointments to complete treatment. Further information on the number of referrals, available consultations and clinic space would provide additional insight into the efficiency and pressures of the service.

The use of computer-aided design and manufacture for foot orthoses: A cross-sectional study of orthotic services in the UK.

This study aimed to identify how computer aided design and manufacture (CAD/CAM) technologies are currently being used for insole production by UK orthotic services in the National Health Service (NHS), including any variation in the specific processes and identify barriers to implementation. A cross-sectional study was undertaken using freedom of information requests sent to all 214 NHS Trusts and Health Boards (HBs) across the UK. The request comprised 22 questions relating to CAD/CAM for insole production by UK NHS orthotic services during the 2021/22 financial year. Analysis was undertaken and presented in terms of response rate to individual questions. Where free text responses were provided, thematic analysis was conducted. Responses were received from 186 (86.9%) Trusts/HBs, those who did not have an orthotic service were excluded, and 131 responses were included in the final analysis. 70.5% (91/129) of Trusts/HBs used CAD/CAM to manufacture bespoke insoles. The most common workflow associated with CAD/CAM insole production was foot-shape capture with a foam box impression cast (86.8% (79/91)); casts transported to another site (90.8% (79/87)); foam boxes scanned into a CAD/CAM system (81.6% (71/87)); insoles designed by a technician (73.6% (67/91)) and insole produced with reduction milling (59.1% (SD 37.92)). The greatest barriers to the use of CAD/CAM were those of equipment costs and staff experience and training. UK orthotic services have widely adopted CAD/CAM insole production, but fully-digital workflow is uncommon. Hybrid-digital workflow involves physical casts and their transportation, generating waste and impacting sustainability. Further research is required to understand how hybrid-digital and fully-digital workflow affect patient treatment outcomes, costs and sustainability. Barriers to CAD/CAM including costs and staff training which should be considered alongside the growing body of research around CAD/CAM technologies.

Evaluation of pathology resources for cervical cancer detection between 2018 and 2022: a retrospective study at Moi Teaching and Referral Hospital, Western Kenya

BackgroundCervical cancer cases are increasing in sub-Saharan Africa, particularly in Kenya, exacerbated by inadequate histopathology resources, posing a significant barrier to timely diagnosis and treatment. There has been little research on the availability and evolution of histopathology resources for diagnosing cervical cancer over the years. This retrospective study evaluated this evolution at Moi Teaching and Referral Hospital in Kenya between 2018 and 2022.MethodsWe used a mixed-methods approach. An in-depth interview was conducted with one of MTRH’s pathology laboratory staff to assess the equipment, personnel, and quality control trends between 2018 and 2022. A thematic analysis was conducted in NVivo. We also retrospectively conducted a comprehensive inventory review of laboratory resources from 2018 to 2022 via purposive sampling. Microsoft Excel and Stata version 17 were utilized for descriptive statistical analysis. Turnaround time (TAT) was assessed against the UK’s National Health Service Cervical Screening Program guidelines.ResultsThe number of histopathology laboratory personnel at MTRH increased from 2018 to 2022, during which the facility included two pathologists, one records person, and one office administrator. Cervical cancer biopsy samples processed by the histopathology lab increased from 225 in 2018 to 674 in 2022. However, the histopathology personnel-to-population ratio decreased from 1.5 pathologists and 2.7 histo-technicians per 100,000 in 2018 to 1.4 pathologists and 1.8 histo-technicians per 100,000 in 2022. Despite this decrease, lab equipment, automatic tissue processors and embedding machines were added, and an average 14-day turnaround time was maintained for cervical cancer pathology reports.ConclusionsOur study highlights a growing burden of cervical cancer with biopsy samples processed by the MTRH histopathology laboratory, increasing from 225 in 2018 to 674 in 2022. Despite challenges such as a declining staff-to-patient ratio and limited resources, the lab maintained a commendable 14-day turnaround time, supporting timely cervical cancer diagnoses. These findings emphasize the need for continued investment in pathology resources and personnel to enhance diagnostic capacity and address the rising incidence of cervical cancer in Kenya and similar low-resource settings. The decline in the personnel-to-patient ratio underscores challenges in diagnosis, emphasizing the need to address workforce and infrastructure gaps to improve patient care within similar low-resource settings.

An Economic Evaluation of Direct Oral Penicillin Challenge for De-Labelling Low Risk Patients With a Penicillin Allergy Label.

Removing inaccurate penicillin allergy labels (PALs) can reduce unnecessary exposure to 'watch' and 'reserve' groups of antibiotics and thereby reduce antimicrobial resistance. The most efficient model for a non-allergy-specialist-led penicillin allergy de-labelling (PADL) service has not been established. To determine the costs to the UK National Health Service of a direct oral penicillin challenge (DPC) for low-risk patients with a PAL in three hospitals in England, each with a different non-allergy-specialist delivery model: pharmacist-led, nurse-led, and mixed multidisciplinary. Cost analysis of the DPC pathway, including resources related to staff time and antibiotics. The effect of de-labelling on healthcare utilisation over 5 years was modelled using data from the published literature. In total, 2257 patients from the Acute Medical or Infectious Disease Unit (AMU/IDU), Pre-surgical, and Haematology-Oncology departments were screened. Subsequently, 126 underwent DPC, and 122 were de-labelled. Twenty-two of these were de-labelled in time to affect their antibiotic regimen; 6 from AMU/IDU and 16 Pre-surgery. The DPC represented 22%-23% of the pathway cost in the pharmacist-led and mixed models, and 15% in the nurse-led model. Across departments and models, the cost per de-labelled patient varied between £577 (95% Credible Interval: 370, 633) for haematology-oncology patients to £2329 (947, 19,504) for AMU/IDU patients, both under the nurse-led model. After 5 years, recouping costs was unlikely for AMU/IDU patients under any model or for all patients combined under the mixed model. The penicillin allergy de-labelling pathway cost was ≥ 4-fold that of the DPC alone. Costs were up to 3 times higher in an acute compared to an elective setting. No short-term cost savings were identified from proactive or opportunistic penicillin allergy de-labelling in this study.

Online Hearing Voices Peer Support Groups: Assessing Feasibility and Acceptability within UK NHS Settings

Abstract Background User-led hearing voices groups (HVGs) have existed for the past 40 years, but little research has been conducted into if and how this approach can be implemented in statutory mental health settings, and whether they can be delivered effectively when held online. The aim of this study was to conduct a feasibility and acceptability trial of an online HVG for the UK National Health Service (NHS) users who hear voices, to inform a future larger-scale trial. Methods A mixed-methods non-randomised feasibility study of an online HVG was conducted with nine participants. Participants attended weekly online meetings for six months, and completed measures of social connectedness, voice hearing, personal recovery, as well as semi-structured interviews, at baseline and 6-months follow-up. Primary outcomes were qualitative and quantitative assessments of feasibility and acceptability. Results 38 participants were referred to the trial, nine of whom were recruited (100% of target sample). The trial had high retention (100%) and engagement (mean = 13.2 groups attended). Participants reported positive features of attending this digital intervention, with 85% reporting it was helpful to meet other voice hearers, that the group helped them make sense of voice hearing experiences, that they received positive messages about recovery, and that the group represented a form of support they could not get elsewhere. Discussion The findings indicate it is feasible and acceptable to run an online HVG within an NHS setting. A larger trial is needed to further investigate the utility, efficacy and cost-effectiveness of running online HVGs in the NHS.

Exploring the potential cost-effectiveness and societal burden implications of screening for fracture risk in a UK general radiography setting.

Fragility fractures lead to considerable societal costs and individual suffering. Despite the availability of cost-effective treatments for high-risk patients, a significant treatment gap exists, with many high-risk individuals remaining unidentified and untreated. The aim of this study was to explore the potential cost-effectiveness and societal impact of opportunistic screening for fracture risk with IBEX Bone Health (BH), a software solution that provides bone mineral density from wrist radiographs, in a UK general radiography setting. The study used a health economic model that compared the health outcomes and costs of screening with IBEX BH versus usual care for men and women aged 50 and older who had a forearm radiograph for any reason. The model incorporated data on fracture incidence, fracture risk reduction, mortality, quality of life, and fracture and treatment costs from published sources and Royal Cornwall Hospitals NHS Trust. Costs and health outcomes in terms of quality-adjusted life years (QALYs) were simulated over the remaining lifetime of patients. The analysis took the perspective of the National Health Service (NHS) and Personal Social Services in the UK. The results showed that screening with IBEX BH was associated with a gain of 0.013 QALYs and a cost saving of £109 per patient compared with usual care, making it a dominant (cost-saving) strategy. Sensitivity analyses confirmed the robustness of the results under various assumptions. Widespread adoption of IBEX BH in the NHS was estimated to save 8,066 QALYs and £65,930,555 in healthcare costs over the lifetime of patients visiting hospitals for wrist radiographs each year. IBEX BH could be a cost-effective tool for early identification and prevention of fragility fractures in the UK, addressing the current challenges of low provision and access to fracture risk assessment and treatment.

Avatrombopag for the Treatment of Immune Thrombocytopenia.

Avatrombopag, a second-generation thrombopoietin receptor agonist (TPO-RA), represents a significant advancement in the treatment of chronic immune thrombocytopenic purpura (cITP) and a potential therapeutic option for other thrombocytopenic disorders. Approved in both the USA and Europe, avatrombopag offers a convenient oral dosing regimen, initiated at 20 mg daily with food, to achieve and maintain platelet counts ≥ 50 × 109/L. Its favorable safety profile, characterized by minimal hepatic toxicity and the absence of dietary restrictions, distinguishes it from older TPO-RAs such as eltrombopag and romiplostim. Clinical trials and real-world data support its efficacy, with over 90% of patients that fail to standard first- and second-line treatments or become unresponsive, achieving target platelet counts, and its hepatotoxicity-free profile makes it particularly advantageous for patients with liver disease or complex comorbidities. Economic evaluations, including a budget impact analysis for the Italian National Health Service, have projected significant healthcare cost savings associated with avatrombopag use, reinforcing its value as a cost-effective therapeutic option. However, challenges remain, including limited data on long-term safety. In this review, we aim to provide a comprehensive synthesis of clinical evidence and real-world data on avatrombopag's efficacy, safety, and pharmacological advantages, while exploring its current and potential therapeutic applications, such as chemotherapy-induced thrombocytopenia and aplastic anemia.

Development of the Team Evaluation and Assessment Measure Quality Improvement (TEAM-QI) and Proof-Of-Concept Testing in Maternity Teams.

Poor teamwork is often implicated in serious healthcare delivery failings, leading to calls for effective team improvement interventions. Taking a complex, adaptive systems perspective, we adapted an oncology team quality improvement program to make it appropriate for other areas of clinical care. Study phases included: (1) meetings with National Health Service, policy and service user representatives (n = 19), a rapid review of existing maternity teamwork interventions, and mapping of the proposed program content to an evidence-based model of team effectiveness; (2) feasibility and acceptability testing of the team questionnaire component, and content analysis of free-text responses with four maternity teams within two NHS Trusts (n = 26). Meetings with representatives highlighted the importance of non-punitive, continuous team-led assessment, and the ability to compare performance to similar teams while enabling adaptability to different team types. Program content mapped well to known components of team effectiveness. Internal consistency of the questionnaire was acceptable (Cronbach alpha = 0.79-0.92). Most team members (76.9%) reported benefits in identifying priorities for improvement. Preliminary proof of concept was supported but larger-scale evaluation including testing in other clinical areas is warranted.

What Do Antenatal Women Want From Their Antenatal Education? A National Survey.

Antenatal education (ANE) equips pregnant women with knowledge and skills for pregnancy, birth, and the postnatal period. It should facilitate preparation for the whole spectrum of the maternal journey and empower women to make informed decisions. This study aimed to explore the antenatal education needs and preferences of women who are currently pregnant or planning a pregnancy. A UK wide cross-sectional survey was conducted (September 2019 to July 2020), recruiting women living in the UK, above 16, who were currently pregnant or planning a pregnancy. The survey gathered demographic information, details of current or planned class attendance, preferred ANE providers and desired skills and information. Quantitative data were analysed descriptively, and free-text responses underwent thematic analysis. Of 553 participants included in the analyses, 77% preferred free National Health Service (NHS) classes and 60% planned to attend multiple class types, including paid options. Participants valued practical skills, particularly for labour and the postpartum period, and actively sought perinatal social networks. Multiparous women were less likely to attend classes, citing prior experience or practical barriers. Despite high interest in NHS classes, regional variations in availability and limited accessibility were noted. NHS antenatal classes are a trusted source of ANE, forming a core element of many women's antenatal journey. However, inconsistent provision highlights the need for a standardised, comprehensive curriculum. Flexible delivery models and tailored content are crucial to address diverse needs, particularly for multiparous women and underrepresented groups. Enhanced accessibility could reduce inequalities in ANE provision and improve maternal outcomes.

Effect of the COVID-19 pandemic on diabetic retinopathy and referral levels in the English National Health Service Diabetic Eye Screening Programme.

The aim was to determine the effect of the COVID-19 pandemic on diabetic retinopathy and referral rates in the English National Health Service (NHS) Diabetic Eye Screening Programme (DESP). Non-patient identifiable data are submitted centrally from the 57 regional centres in the NHS DESP on a quarterly basis and analysed using STATA, comparing 01/04/2019-31/03/2020 and 01/04/2021-31/03/2022. Patient characteristics were analysed from National Diabetes Audit (NDA) data. There were 2,274,635 grades from the 57 centres in 2019-2020 and 2,199,623 grades in 2021-2022. The proportion of eyes with referable DR increased from 3.1% in 2019-2020 to 3.2% in the 2021-2022 NHS year (p < 0.01) with a small increase in the level of non-referable DR from 24.6% to 24.8% (p < 0.01). The median proportion of ungradable eyes in 2019-2020 was 2.6% (IQR: 2.3% to 3.3%) increasing to 3.1% (IQR: 2.5% to 3.7%) in 2021-2022. NDA data demonstrated that the proportions with type 1 diabetes receiving eye screening were higher in the latter year (8.3% vs. 7.3%). The COVID-19 pandemic was associated with small increases in referable retinopathy rates from 3.1% to 3.2%, non-referable DR from 24·6% to 24.8% and an increase in the ungradable image rate from 2.6% to 3.1%, the latter increase possibly being caused by untreated cataract during the pandemic. Risk stratification of invitations in the recovery period was believed to have contributed to keeping the referable rates low and supports a similar approach in extension of the screening interval for low-risk groups.

Outcomes of cataract surgery training among ophthalmology trainees in the independent sector and within the NHS

ObjectiveThe surge in National Health Service (NHS) cataract procedures in the independent sector (IS) has reduced opportunities for cataract surgical training among ophthalmology trainees. This study aims to analyse IS...

Routes to social prescribing outside National Health Service (NHS) structures: a systematic map

ObjectivesSocial prescribing, linking to community-based interventions to support individuals’ health and well-being, has become established across social medicine in the UK. Currently, most of the evidence and knowledge about how...

How Sustainable Are Hospital Menus in the United Kingdom? Identifying Untapped Potential Based on a Novel Scoring System for Plant-Based Provisions.

Adopting plant-forward diets is essential for achieving climate targets. As the second-largest provider of public sector meals in the UK, the National Health Service (NHS) can significantly reduce its environmental impact by transitioning to plant-forward menus, contributing to its goal of being a net-zero healthcare service by 2045. This study evaluates the extent to which NHS hospitals currently align with sustainable practices by assessing the plant-forward nature of in-patient menus. Green Plans from 40 hospital trusts were analysed to assess commitment to plant-forward, lower-emission menus. Freedom of Information requests were sent to 50 NHS trusts, and 36 menus from the spring/summer season of 2024 were analysed. A novel scoring system was developed to assess the hospital menus, with subscores reflecting the availability of plant-based meals, ruminant-meat meals, and menu strategies to encourage plant-forward choices. Green Plans showed limited commitment to increasing plant-based food options. Hospital menus scored poorly overall (average score of 20/100, range: 9-38). The lowest subscores were observed in the provision of fully plant-based meals and nudging techniques. The provision of ruminant meat varied (subscore range: 0-100) and all hospitals included processed meat on their menu. Hospitals with outsourced catering scored higher than those with in-house catering. Despite national recommendations to shift towards plant-forward diets, NHS hospitals currently show little commitment and provide limited offerings in this regard. The novel scoring system offers a practical framework for monitoring progress and guiding hospitals towards environmentally sustainable, plant-forward menus.

Breaking Barriers Transforming Primary Care to Serve the Physical Health Needs of Individuals With SMI in the NHS.

This critical review paper examines the health inequalities faced by individuals with Severe Mental Illness (SMI) in the United Kingdom; highlighting the disproportionate burden of physical health conditions such as respiratory disorders, cardiac illnesses, diabetes and stroke amongst this population. These conditions contribute to a significantly higher rate of premature mortality in individuals with SMI, with two-thirds of these deaths deemed preventable. Despite the National Health Service (NHS) acknowledging the need to address these health inequalities, the mortality gap between those with and without SMI continues to widen. Additionally, there is limited engagement from service users in annual physical health checks, a concern that this paper addresses by identifying several barriers and providing recommendations to improve access and engagement in physical health checks. This review emphasises the focus on primary care systems as a critical point for addressing health disparities in individuals with SMI. Also, it highlights the need for primary care services to be more adaptive and integrated, playing a key role in managing the physical health of patients with SMI through regular health checks, flexible service delivery, and enhanced coordination with secondary care. Effectively supporting individuals with SMI requires tailored, integrated primary care interventions that address both psychological and physical health challenges, considering diverse demographic needs across the UK.

Abstract 35: Impact of Artificial Intelligence Imaging Decision Support Software on Treatment of Acute Ischemic Stroke in England

Introduction: AI imaging decision support software is recommended by UK and USA stroke guidelines to facilitate identification and transfer of stroke patients eligible for endovascular therapy (EVT) but the impact on thrombectomy delivery is unclear. This prospective observational study evaluated the impact of Brainomix 360 Stroke software in four stroke networks (28 hospitals) in England’s National Health Service (NHS). The primary outcome was percentage of acute stroke patients receiving EVT (the EVT rate); door-in door-out (DIDO) times were assessed as a secondary outcome. Methods: Data were collected prospectively from the Sentinel Stroke National Audit Programme. The impact of Brainomix 360 Stroke software was assessed in two ways: comparison of EVT rates at the 28 evaluation sites and non-evaluation NHS sites before and after implementation (pre-implementation: Jan 2019-Feb 2020; post- : Jan 2022-Feb 2023); comparison of EVT rates and DIDO times at evaluation sites after implementation in patients for whom AI software was used and in those it was not. Multivariate regressions were used to evaluate whether AI use was a predictor of EVT or DIDO time, accounting for other clinical variables (e.g., age, NIHSS, day of week, time of day, time since onset). Results: The dataset included 71,327 patients from 28 evaluation hospitals. Figure 1 shows the change in EVT rates over time in evaluation (blue) and non-evaluation sites (yellow). EVT rate at evaluation sites increased from 2.3% pre-implementation to 4.6% post-implementation (p&lt;.0001). By contrast, EVT rate at non-evaluation sites changed from 1.6% to 2.6% (p&lt;.0001). After implementation, cases that were reviewed with AI software support were more likely to receive EVT (5.9% vs 3.6%; OR=1.6 [95% CI:1.3-1.9, p&lt;.0001). When limiting the analysis to cases admitted to primary stroke centres, the EVT rate was twice as high in cases reviewed with AI software (4.7% vs 2.2%; OR=2.3 [1.8-3.1], p&lt;.0001). DIDO times were shorter for cases reviewed with AI software (median 127 vs. 192 minutes; p&lt;.0001). Conclusions: This prospective study showed that use of AI imaging software was associated with a higher rate of EVT, both by comparing pre- vs. post-implementation data, as well as by comparing cases for whom AI software was versus was not used. Use of AI software was also associated with faster time to transfer. The results support guideline recommendations for AI software to be used in clinical practice.

Implementing Mental Practice in Postgraduate Surgical Training for Minimally Invasive Surgery: A Systematic Review and Thematic Analysis.

Unprecedented pressure on the National Health Service (NHS) has meant that there are increasing obstacles to surgical training. Simulation training is an option to improve surgical performance but is limited due to availability, accessibility and financial constraints. Mental practice (MP) has been proposed as a potential solution to supplement the traditional method of apprenticeship-style learning. Despite increasing evidence that MP may be a useful tool to improve surgical performance and reduce surgeon anxiety, it is not widely adopted. This systematic review and thematic analysis aims to identify key themes that would allow for the successful implementation of MP in postgraduate surgical training. Medline, Embase and PsycINFO databases were systematically searched to identify articles that investigate the role of MP in improving surgical performance amongst surgical trainees. Retrieved papers were studied to inform thematic analysis of their content and studies were assessed for bias. A total of 321 studies were retrieved, of which 11 met the inclusion criteria. Overall risk of bias was assessed to be between critical and moderate for seven nonrandomized studies and between fair and good for four randomized studies. Key themes were identified and discussed using a thematic analysis approach. This study has identified that attaining high quality mental imagery is fundamental to success in mental practice and this can be augmented by the use of relaxation therapy and/or motivational imagery. Future research should focus on the application of MP in real-world surgical practice and breaking down complex procedures into fewer operative steps.

Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK

Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK

Annual versus less frequent mammographic surveillance in people with breast cancer aged 50 years and older in the UK (Mammo-50): a multicentre, randomised, phase 3, non-inferiority trial.

The frequency of mammographic surveillance for women after diagnosis of breast cancer varies globally. The aim of this study was to evaluate whether less than annual mammography was non-inferior in terms of breast cancer-specific survival in women aged 50 years or older. Mammo-50 was a multicentre, randomised, phase 3 trial of annual versus less frequent mammography (2-yearly after conservation surgery; 3-yearly after a mastectomy) for women aged 50 years or older at initial diagnosis of invasive or non-invasive breast cancer and who were recurrence free 3 years post curative surgery. The trial was conducted at 114 National Health Service hospitals in the UK. Participants were randomly assigned (1:1) to annual or less frequent mammograms at 3 years post curative surgery and were followed up for 6 years. The co-primary outcomes were breast cancer-specific survival and cost-effectiveness. The cost-effectiveness analysis will be reported elsewhere. Breast cancer-specific survival was assessed in the intention-to-treat population. Secondary outcomes were recurrence-free interval, overall survival, and referrals back to the hospital system. 5000 women provided 90% power to detect a 3% absolute non-inferiority margin for breast cancer-specific survival with 2·5% one-sided significance. The trial was registered with the ISRCTN registry, ISRCTN48534559; recruitment is complete but longer-term follow-up is ongoing. Between April 22, 2014, and Sept 28, 2018, 5235 women were randomly assigned to annual mammography (n=2618) or less frequent mammography (n=2617). 3858 (73·6%) women were aged 60 years or older, 4202 (80·3%) had undergone conservation surgery, 4576 (87·4%) had invasive disease, 1159 (22·1%) had node positive disease, and 4330 (82·7%) had oestrogen receptor-positive tumours. With a median of 5·7 years follow-up (IQR 5·0-6·0; 8·7 years post curative surgery), 343 women died, including 116 who died of breast cancer (61 in the annual mammography group and 55 in the less frequent mammography group). 5-year breast cancer-specific survival was 98·1% (95% CI 97·5-98·6) in the annual mammography group and 98·3% (97·8-98·8) in the less frequent mammography group (hazard ratio 0·92, 95% CI 0·64-1·32), demonstrating non-inferiority of less frequent mammography at the pre-specified 3% margin (non-inferiority p<0·0001). 5-year recurrence-free interval was 94·1% (95% CI 93·1-94·9) in the annual mammography group and 94·5% (93·5-95·3) in the less frequent mammography group. Overall survival at 5 years was 94·7% (95% CI 93·8-95·5%) and 94·5% (93·5-95·3), respectively. 224 (64·9%) of 345 breast cancer events were detected from emergency admissions or symptomatic referrals back to the hospital system, including 108 (61·7%) of 175 in the annual mammography group and 116 (68·2%) of 170 in the less frequent mammography group. For patients aged 50 years or older and at 3 years post diagnosis, less frequent mammograms were non-inferior compared with annual mammograms for breast cancer-specific survival, recurrence-free interval, and overall survival, and should be considered for this population. National Institute for Health Research Health Technology Assessment programme.

What are the lived healthcare experiences of patients with primary sclerosing cholangitis? A community-based qualitative interview study

ObjectivesPrimary sclerosing cholangitis (PSC) is a rare chronic disease that presents challenges to both patients and clinicians. This study aimed to explore the experiences of patients with PSC regarding their...

Prevalence and demographics of 331 rare diseases and associated COVID-19-related mortality among 58 million individuals: a nationwide retrospective observational study.

The Global Burden of Disease Study has provided key evidence to inform clinicians, researchers, and policy makers across common diseases, but no similar effort with a single-study design exists for hundreds of rare diseases. Consequently, for many rare conditions there is little population-level evidence, including prevalence and clinical vulnerability, resulting in an absence of evidence-based care that was prominent during the COVID-19 pandemic. We aimed to inform rare disease care by providing key descriptors from national data and explore the impact of rare diseases during the COVID-19 pandemic. In this nationwide retrospective observational cohort study, we used the electronic health records (EHRs) of more than 58 million people in England, linking nine National Health Service datasets spanning health-care settings for people who were alive on Jan 23, 2020. Starting with all rare diseases listed in Orphanet (an extensive online resource for rare diseases), we quality assured and filtered down to analyse 331 conditions mapped to ICD-10 or Systemized Nomenclature of Medicine-Clinical Terms that were clinically validated in our dataset. For all 331 rare diseases, we calculated population prevalences, analysed patients' clinical and demographic details, and investigated mortality with SARS-CoV-2. We assessed COVID-19-related mortality by comparing cohorts of patients for each rare disease and rare disease category with controls matched for age group, sex, ethnicity, and vaccination status, at a ratio of two controls per individual with a rare disease. Of 58 162 316 individuals, we identified 894 396 with at least one rare disease and assessed COVID-19-related mortality between Sept 1, 2020, and Nov 30, 2021. We calculated reproducible estimates, adjusted for age and sex, for all 331 rare diseases, including for 186 (56·2%) conditions without existing prevalence estimates in Orphanet. 49 rare diseases were significantly more frequent in female individuals than in male individuals, and 62 were significantly more frequent in male individuals than in female individuals; 47 were significantly more frequent in Asian or British Asian individuals than in White individuals; and 22 were significantly more frequent in Black or Black British individuals than in White individuals. 37 rare diseases were significantly more frequent in the White population compared with either the Black or Asian population. 7965 (0·9%) of 894 396 patients with a rare disease died from COVID-19, compared with 141 287 (0·2%) of 58 162 316 in the full study population. In fully vaccinated individuals, the risk of COVID-19-related mortality was significantly higher for eight rare diseases, with patients with bullous pemphigoid (hazard ratio 8·07, 95% CI 3·01-21·62) being at highest risk. Our study highlights that national-scale EHRs provide a unique resource to estimate detailed prevalence, clinical, and demographic data for rare diseases. Using COVID-19-related mortality analysis, we showed the power of large-scale EHRs in providing insights to inform public health decision making for these often neglected patient populations. British Heart Foundation Data Science Centre, led by Health Data Research UK.